Ellen, I wrote to you earlier about grateful I was about you having Kensie on your show and raising awareness about this disease. I just wanted to say that people can help by going to www.myositis.org and make a donation to hopefully help find a cure! I put up a link to the website in my myspace and asked friends to help donate anything at all if they could and my friend Nik who is in the army is making a donation all the way from Iraq! It's absolutely amazing how we can all make a difference by helping out just a little bit. Nik is an awesome guy for doing what he did and I thank you again Ellen for putting this disease in the spotlight!

Thank you so much for your show on dermamyositis, any exposure this rare set of diseases can get is wonderful. I didn't have any knowledge of this disease until my husband was diagnosed the polymyositis last year, which is basically the same but without the skin issues. We are still dealing with getting him to be able to walk again. It's hard because so many Dr's don't know how to deal with it, so it's just wonderful to have media exposure!!. Thank you so much Ellen!

Ellen,

I just heard that you had a show with a young lady named Kensie who has Juvenile Dermatomyositis. I am the mother of a little girl named Cara , age 9, who was diagnosed with JDM last July. We are in Chicago seeing Dr. Pachman, and I missed seeing the show. I was wondering if I could get a copy of the show sent to me? I would love to see it. I am so happy that you had Kensie on your show, which will help raise awareness about this horrible disease. My daughter was a level 4 gymnast and a model before she was diagnosed and her life has changed dramatically since then, and so has ours. Thank you so very much for raising the awareness which will help us find a cure.

Thank you so much for bringing awareness to dermatomyositis. I am 28 years old and was diagnosed about a year a half ago with dermatomyositis. It is such a rare disease and not many people know about it. The Myositis Association has been trying to raise awareness. Thank you so much for your help, this means the world to not only Kensie but everyone who suffers with this illness.

Dear Ellen:-

Thank You so much for bringing JM (Dermatomyositis )to everyones attention. My granddaughter has been affected by this disease for the last four years.
She had to give up her favorite sport soccer, and lives a lot of the time with a red rash on her face and a moon face from the medication, which she is going through at the this time.

In spite of missing a lot of school because of her disease and hospital days, she has mainted a 98.4 average on her report card, she is in 7th grade, 12 years old and has become an unbelieveable poet.

Needless to say, she is my hero, I have never met another person like her.

So again, thank you and bless you for what you have done.

Rosalie Davis
Philadelphia, PA

Hi Ellen-
I personally do not have JM, but my best friend, who is turning 30 was just diagnosed with JM two years ago. She played basketball at a top Division I school, and when I learned of this disease, it didnt make sense. She never talks about it with me, maybe because she thinks I wouldn't understand. Which I didn't, until your show. I sent her the link and asked her "is this your disease"? It was, and now I can learn more about it with the website listed...www.curejm.com. Thank you for helping me understand this disease and what my best firend is dealing with daily.
Jill Younce

A very touching story..thank you for sharing Ellen! I wish I could meet you too lol.. :)

Dear Ellen,

I have a very blessed story to tell you. I am 48 years old and attended my very first myositis conference through "The Myositis Association" eight yrs. ago thanks to a very special "grandma", Harriet Bollar, who posted earlier to you. Harriet and I have been dear friends since meeting at the conference. We keep in contact by e-mail. We live in opposite directions (she is far West and I far East). I don't know if we will ever get to see one another in person again. We share a special determination to cure celiac disease and myositis. There is a link. I have both diseases. Being on a gluten-free diet has shown to be helpful for many diseases, even cancer. I have been celiac for 15 years now and dx. with dermatomyositis for eight. My heart goes out to all celiacs. Heidi Collins from CNN and Elisabeth Hasslebeck from the View have Celiac. Celiac Disease has a prevalence of 1:120 which is greater than autism, but unfortunately is not being diagnosed and can also be asymptomatic.

You are a hero for bringing awareness to "rare" diseases that may not be as rare as researchers tend to think.

Your biggest fan,
Elaine M.

Hi Ellen! Thank you for granting Kensie's wish! I was so excited that you featured her on your show. JM is so rare.

My son was diagnosed when he was four. He is now five. He currently takes a lot of medication including methotrexate and IVIG.

We are in Chicago now. We fly in from Texas every four months to see Dr. Pachman.

I honestly don't know what we would have done without Cure JM. Through their efforts of providing awareness I was able to learn about this rare disease and offered the opportunity to get my son the best treatment.

Thanks Ellen for helping to raise awareness about this horrible disease. Some children are not diagnosed for years and are wheel chair bound before the are diagnosed.

Lori Kennemur

I was shocked when i heard that she had dermatomyositis. I have juvenile dermatomyositis i was diagnosed in 1999. I has almost been 10 years since i got diagnosed. Bringing awareness to this disease will help the MDA and JDM. I have only met a few other people with my disease and it was amazing how you helped fulfill her dream.

Hi Ellen, I'm Joe, Kensie's Dad. First I wanted to say thank you for all you did for Kensie. But I also wanted you to know that you did more than bring awareness to Myositis.
My son Dominic, Kensie's Brother is 10 he was so excited to see his sister on your show that he made us make a copy so he could take it to show his class. The school showed it to five different classes to let the kids see how much teasing someone could hurt.
So again Ellen, thank you.
Joe Montalto

Hi, Ellen,
I am an avid fan of your show, but unfortunately missed the episode that featured Kenzie and the topic of Myositis. I am 49 years old and was diagnosed 13 years ago when I miscarried in my 5th month of pregnancy due to the myositis. I wanted to thank you for bringing this illness to the public. It is a frustrating and debilitating disease to live with. I have gone from a wheelchair to walking unassisted many times over the last 13 years; the future is always so uncertain. I am hopeful that with more exposure will come a cure. If there is anything else you can do to keep the word out it would be eternally appreciated. Keep dancing!
Lauren Boyadjis
Morristown, NJ

Ellen,

Thanks for having Kensie on your show. As someone who has lived with this disease for 15 yrs I am encouraged that there is finally some visibility in the community. It affects about 50,000 in the US and so there isn't much going on as far as research goes. Every little bit helps and encourages those who are suffering.

Becki

Ellen,

i watch your show almost every single day when i get home from school, and well, i'm wondering if i might suggest that you have Ron Pope on your show. He has the best voice ive ever heard, and i really think you should consider having him on your show. His band name is The District. Who knows you may already know of him, i just think it would be awesome if you could have him on your show so everyone could here his wonderful voice!

Danica

On April 25th of this year our daughter Desiree was diagnosed with Dermatomyositis . After learning that Ellen had featured this disease on her show I was excited to find out more. We were told this was something she could have had since early childhood but never been properly diagnosed. She alway had unexplained rashes, aching, tiredness, and clumsiness. It's hard as a parent since you never want to see your child hurting, no matter what their age, Desiree is 19. Desiree has her appointment on Monday to dicuss treatments options.

Thanks for all the inspiration postings.

Hi Ellen I would like to thank you for the great shows you do. I don't have alot of time to watch T.V. but when i can i watch your show.I am a single mom of 3 children work full time.My youngest daugther just turned 2 in april and she has been sick for one year.None of the doctors can tell me whats wrong with her. she has a rash on her face. every so often it really swells up it almost looks like a burn on her face. so i take her to the doctors again. and they give me more medacine.she has had 42 percriptions in the last year.I really dont know what to do any more. on Thursday i got a call from my sister and she told that i have to watch your show. she told me about it. When i watch it i couldn't belive it when i saw Kensie face when she wae a little girl it looks just like my daughters.I would really like to know more about this and how i can get my daughter tested.after watching your show i finally felt like maybe theirs a answer.love you .please help me.. hope to hear from you.

love kathy OToole

Ellen,

Thank you for helping us raise awareness for myositis! I was diagnosed with juvenile dermatomyositis in 1991, just as I was turning 11. I was able to get off meds for a while but it came back a few years ago. Now I get IV treatments every other week. It's hard to juggle nursing school, work and regular doctor's visits.

Most doctor's don't know what myositis is so now you can consider yourself more informed than a lot of docs! The more people know about JDM, the faster it will be diagnosed and the better the kids will do. Thanks again for helping us move in that direction!

You know, in January CureJM is having their 5 year anniversary in Carlsbad, CA... we'd love to have you there!

Praying for a cure and another chance at remission.

Chy

Ellen,
Thank you so much for granting Kensie's wish and in the process raising awareness of her rare disease, juvenile dermatomyositis (JDM).

The CURE JM FOUNDATION (www.curejm.com), is an volunteer organization founded by families who hope to raise awareness and fund research in order to find a cure for this rare autoimmune disease. We offer support and education to families, friends and neighbors through our web site. This support is so important as many families never meet anyone else with this rare disease.

My daughter was diagnosed with JDM is September 2004. She continues to receive treatment and we look forward to the day when her physician says that she is in remission. She had to give up her favorite sports, but is now finding "her musical side" through singing and acting.

Thank you again for making Kensie's wish come true as well as helping other families with JDM know that they are not alone and that there is hope!

Sincerely,

Patti Lawler
Cure JM Foundation Board
www.curejm.com

Ellen,

I'm writing this in awe right now. My sister-in-law sent me the link to view this story. To see someone with JDM featured on your show totally blew me away!

My daughter, Rachel, was diagnosed in May, 2004 with this terrible disease. She went undiagnosed with severe symptoms for 18 months!! She suffers from calcifications (one of many complications of this disease) on her feet that get so big she can't wear tennis shoes.

It's heartbreaking to have a child, any child, going through the pain and emotional toll that a disease inflicts on them and the entire family.

I've been involved with CureJM since 2004. This is an organization founded on love and the drive to find a cure for this disease. The support that each family gives each other is unending. I know that if I'm having a rough day, or Rachel is having another one of her complications, I can post a message and someone knows EXACTLY what I'm going through and feeling.

This disease is pretty rare, and trying to raise awareness about it is difficult to say the least. THANK YOU for bring this disease and CureJM to a national audience. You are an incredible and generous woman.

Sincerely,
Michelle Shewbridge
CureJM Team Leader

(Mom to Rachel, dx 5/04 with JDM)

Hi Ellen,

I'm Leidi Laarni M. Layco from Philippines...i love watching your show especially when charice came there!!! it was so cool that filipinos were know until there!, i have watched kensie with her different illness and then she is now you daughter... she also said that continue dreaming either big or small...that gives me an insight of what if i had Dermatomyositis could you invite me and fly over just to see you?...i am dreaming of that moment since i known your show...that a small person like me could come over from my hometown just to see my idol and can be a role model to everyone who watches. Thank You Ellen and more powers!

Hi Ellen,
My name is Lynn Fletcher and I live in Calgary Alberta Canada. I was watching your show today and almost fell off the couch when I saw Kensie and heard she had Dermatomyositis!!! I personally do not know anyone other than myself that has it or even knows what it is. I was one of the first JDM cases to be diagnosed in Canada. I was 17 then (1987) and have been through 21 years of the disease. I am 38 now.

I, like Kensie, suffered the awful sunburns, scarring, muscle weakness, fatigue, drug experiments, and depresison for many years (12 to be exact). As if all of that wasn't enough, the stares and gossip behind my back at school was almost too much to bare sometimes. My parents were at a loss and were so saddened to see their daughter in so much pain. I looked like a burnt lizard for my last two years of high school and wore long sleeves and pants all summer!! My dream was to wear short sleeves, if you can believe that.

After all of that crap I had to deal with, I am happy to say that I went into remission in 1998 and have been relatively healthy since. My skin cleared up and have gained most of my mobility in my muscles. It is wierd to say but, all of those years of struggle has made me very strong and very determined to be everything I wanted to be in life. After all, it really is too short.

The happiest moment of my life and the icing on this very large cake.... is my brand new HEALTHY, PERFECT baby daughter: Mattea! I never thought that I would be able to have children, but God gave us an incredible gift. She has given me the strength to keep going despite my exhaustion, and strive to stay healthy.

I feel so lucky to have had this disease and to have come so far in my personal growth. Suffering through it has taught me how to be tough and to push through and accomplish things I never knew I could. The determination I needed to fight this desease has transcended into EVERY part of my life. I saw that determination in Kensie yesterday and saw myself in her. I felt compelled to write you (and Kensie) to say that I went through EXACTLY what she is going through right now. It is awful to endure, but somehow we find ways of having positive attitudes... and somehow we get through the hurdles. Life teaches you amazing lessons in the oddest of places doesn't it?

My love goes out to Kensie, to all the people who have posted here, and to you Ellen for seeing that special spark in Kensie and making her wishes come true!!

Ellen,

We, your viewers, feel as though we can speak with you as we would our own sister or our best friend, so that is what I am going to do. Myositis is a disease most people (including doctors and nurses) have never even heard of. I know I hadn't until three years ago. Now my life consists of doctor appts, hospital visits, IVIG treatments, steroids and harmful drugs. I'm tired of hearing my doctor remind me that "we can manage this disease, but remember there is no cure" and he doesn't even add "yet"! We who have this disease don't want to hear this any longer. We are tired of not knowing what tomorrow holds. Will we sleep 16 hrs a day for the next three days, will we be able to climb a few stairs, will we be able to dress or bathe, basically, will we be able to function at all? This goes on day after day until years have gone by. We who suffer from this very debilitating and depressing disease need help. We especially need help for children like Kensie. Myositis has to be brought to the public's attention and Ellen, we thank you for doing that. Most of all, we thank you just for being you.

Lynn Fraser
Ontario, Canada

Ellen,

Thank you so much for bringing Kensie on your show and bringing awareness to children suffering dermatomyositis. My daughter was diagnosed over two years ago, and we spend a lot of time explaining what it is to family, friends, and the community. I was in complete disbelief when I got a call to turn on your show because there was a girl on there with the same disease as my daughter. Thank you for all the happiness you brought to Kensie, who has been through so much, and for all the joy you have brought to the myositis community for just getting the word out that this disease does exist.

Dear Ellen!

I wish you were here... I would hug you!

Your show featuring Kensie was like flower petals falling on me and the entire myositis community.

You have raised more awareness in one show than any other event or effort in the history of this rare disease. Thank you! Amazing!

Kensie's courage and determination to dance and live, even while battling this rare disease is so inspiring to everyone, and especially to the thousands of other myositis patients and families who know so well what she is going through. You are awesome, Kensie! And beautiful!

My granddaughter, almost 17 now, was diagnosed with JDM in 2000. Shari Hume (who has already posted here) and I, along with our families began the CURE JM FOUNDATION to fund research to find a CURE for this disease. We are now thousands strong, managed and supported by families battling juvenile myositis, from all over the world. We are 100% volunteer and hope to see the day when juvenile myositis is a thing of the past and all the patients dancing on your show, Ellen!

Thank you!

Harriet Bollar
CURE JM FOUNDATION
www.curejm.org

Dear Ellen!

I wish you were here... I would hug you!

Your show featuring Kensie was like flower petals falling on me and the entire myositis community.

You have raised more awareness in one show than any other event or effort in the history of this rare disease. Thank you! Amazing!

Kensie's courage and determination to dance and live, even while battling this rare disease is so inspiring to everyone, and especially to the thousands of other myositis patients and families who know so well what she is going through. You are awesome, Kensie! And beautiful!

My granddaughter, almost 17 now, was diagnosed with JDM in 2000. Shari Hume (who has already posted here) and I, along with our families began the CURE JM FOUNDATION to fund research to find a CURE for this disease. We are now thousands strong, managed and supported by families battling juvenile myositis, from all over the world. We are 100% volunteer and hope to see the day when juvenile myositis is a thing of the past and all the patients are dancing on your show, Ellen!

Thank you!

Harriet Bollar
CURE JM FOUNDATION
www.curejm.org

Dear Ellen,
Thank you for bringing attention to Kensie's battle with JDM. I myself have been diagnosed with dermatomyosittis just this year at age 52 and it's hard for me to accept the fact that children get this also. I can't even imagine, because I know first hand the pain and struggles that keep company with this disease. I thank you for the exposure you have brought to it because it is well needed. Pray for more research. Pray for a cure.
Sincerly,
Angela Cunningham

Ellen, words cannot begin to explain how grateful I am that you had Kensie on your show! Not only did you make her wish come true but you've brought attention to this awful and rare disease. I'm sad that I missed your show but I heard about the episode throught my Dermatomyositis support group.

I am 20 years old and I was diagnosed with Dermatomyositis last September and needless to say it has been a tremendous struggle to deal with. This disease effects everyone differently. I went through several months of physical therapy and high doses of prednisone to help me build back my muscles after they had been so badly damaged.

It's so hard to hear that Kensie has been suffering from this disease since she was 2 and that many other children suffer from it. It breaks my heart knowing that they can sometimes not run around and play like any normal child could do. Knowing how hard it was for me to just sit up or walk or even brush my hair is such a gruesome thought for me now, I can't even imagine how hard it must be for a child to go through.

I am glad to say that I am doing much better nowadays, but still have my struggles every now and then with doing normal things like most people with DM have. I am so thankful to you, Ellen, for acknowledging that this disease exists and for letting Kensie tell her story.

THANK YOU ELLEN:

Thank you so much for having Kensie on your show She is a beautiful and couragous person and Ellen,you brought attention to this disease that few have ever heard of.

My granddaughter was diagnosed in Feb. 2004. That is the first time our family had heard of this disease. We were so lucky to hear of Cure JM Foundation soon after her diagnoses. They provided knowledge and strength when we needed it so much.

My granddaughter takes several drugs a day plus IV drugs each week in hopes of a remission some day. Ellen, she too loves to dance. We have learned to expect while she is getting her IV drugs to put them along with her small pump in a large tupperware bowl, place it on her head, hold it with one hand and dance. This is so funny to see plus it gives us all a needed laugh. We love to see her dance almost as much as she loves it. We can all remember when she couldn't even walk. She makes a dance out of everything.

Ellen, these children can't thank you enough for what you have done for them by bring this to the attention of so many people that watch your show.

All our children, grandchildren, families and friends work for a cure in the near future.

Thank you so very much for what you have done to help us.

Mary Stepp
CFO Cure JM Foundation

Thank you Ellen for giving Kensie such a memorable day, and for helping to raise awareness of Juvenile Dermatomyositis (JM). My 10-year-old son has been battling this disease since the age of 4...with regular IV treatments, injections, and a cocktail of pills.

I am a co-founder of the Cure JM Foundation (www.curejm.org) and our mission is to raise awareness, provide family support and fund research into a cure for JM. By airing this show, many more families have found our website and they have been able to make much-needed connections with other families.

Both Kensie and you are true heroes! Thank you!

Shari Hume
Co-Founder, Cure JM Foundation
www.curejm.org

Hi Ellen:

Kensie sounds like a remarkable young lady. Thank you Ellen for sharing Kensie with the millions of viewers of your show.

Myositis diseases (Dermatomyositis, Juvenile Dermatomyositis, Polymyositis, and Inclusion Body Myositis) are extremely rare so any publicity received is so important. Education is clearly power for people who have chronic dibilating diseases.

It typically takes years to get an accurate diagnosis because so many doctors have not had patients with these disorders previously. It is difficult for patients to get proper treatment because experienced physicians are far and few between due to the rare nature of myositis.

I urge your viewers to familiarize themselves a little with the myositis diseases by going to www.myositis.org This is the website of The Myositis Association and it is a wonderful reference source for patients, medical professionals and the general public who just want to know more about myositis.

Ellen, if you or others that you know are able to do any more to publicize what myositis diseases are, and the challenges that face patients and medical professionals I would encourage you to do so. It will be very much appreciated by so many.

Thank you so much Ellen.

Karen

Dear Ellen on feb 28th 2008 i lost my mother to breast cancer she was only 50 yrs old. this is my first mothers day with out her and i am having a really rough time..i would hope that more people would appreciate the time they spend with there mothers cause you never know what could happen.

Dear Ellen, Greetings from Nova Scotia, Canada!1
I watch you daily and yesterday, I unfortunately didn't tune in until half way thru your interview with Kenzie but I was at least able to hear some of it.
I would like to say how marvelous she is. She has so much courage and strength. Its not easy living with Dermatomysitis as I have for 25 years (although I have been in remission since 1989).
In 1983 I was diagnosed with this terrible auto-immune disease. I was 25 at the time. It was not an easy task living with this for six years, however I am pleased to say I was slowly weaned off prednisone and fortunately with the exception of one flareup I have been in remission since that time. During the time I was fighting this, I continued to have a positive outlook and honestly believe today that it helped.
I think what really hit me the hardest during your interview with Kenzie was the fact that kids make fun of her because of the red blotches on her face. i experienced the same thing although it was not children who critized me, but adults. In any event, I held my head high and never lost my enthusiasm during the fight.
Thank you Kenzie for being an inspiration to all and to you Ellen for opening up the door in order for people to understand and learn about this disease.
Your friend Victoria Hill-Gould from Amherst, Nova Scotia

WAY TO GO, KENSIE AND ELLEN! It is great to see compassion in action.

I was diagnosed with Giant Cell Myositis in 2006. I had to stop teaching at the middle school for six months. I went from a wheelchair, to a walker, to a cane, to now walking without the aid of any device. Because I have been so blessed and fortunate, I have started a benefit Harley ride for people like you, Kensie, and countless others who suffer from myositis called "Riding For Those Who Can't...Yet". Last year, I rode from So Cal to Sturgis, SD and back. I received over $13,000 in donations that went to the The Myositis Association. This year, I will be riding to Canada (4,000+ miles)to help bring awareness and financial resources to The Myositis Association to help fund research. My goal is $15,000. I have a website (WWW.RIDING4THOSEWHOCANT.ORG)that details this year's and last year's rides and a place to make a donation. Please pass this on to your family and friends so we can fund the necessary research to find a cure for myositis.

THANKS, KENSIE AND THE COUNTLESS OTHERS WHO GIVE ME A REASON TO RIDE...

Stay strong!
Steve

Ellen... word's can't begin to express the feelings of appreciation, pride and adoration that I have for you, your staff and the Make a Wish Foundation for what they have done for my cousin Kensie. Individuals like yourself, and all those involved in making this all happen for Kenise, renew my faith in humanity and remind me of how much we can enhance the lives of people we choose to touch. It brought tears to my eyes everytime I've seen Kenise on the news, on the radio and on your show. It's been a long time since I've seen her glow and genuinely smile like she has over the past week. THANK YOU for being such an amazing person, for using your large audience to make a positive difference in peoples lives, for bringing national attention to this awful disease, for bring hope and inspiration to those who need it most and for giving us all another great reason to DANCE!

Bobbi

Children. As a mom to a son with cerebral palsy, I know first hand how difficult everything can be from, participating in "normal" activities to just bonding with others parents or even adults in general. You start to feel so isolated after a while, mainly because the people that use to be your friends, no longer understand you or your life. They still try to be nice, but you can see the pity in their eyes when they talk to you or look at your child. I just thought it would nice to have a show where everyone has something in common and can have one day to feel at ease around other people. We don't get to go out and do things that often. THanks! And I hope you consider this suggestion. Take care.

THANKS!!

We cannot thank you enough for bringing awareness to juvenile myositis! My 8 year old daughter was diagnosed with juvenile dermatomyositis in early 2004. She has been in treatment since then without a break, getting weekly IV meds, physical therapy and she has a feeding tube for nutrition.

Because this it is rare we do not get enough research for better treatments and a CURE! I am president of the Cure JM Foundation and we are working hard to make all this happen.
Please help us by continuing to raise awareness!!

Connie Radzwion

Ellen,
God bless you for increasing the awareness of Juvenile dermatomyositis. My grandaughter was diagnosed with this disease at the age of two, she is seven years old and still receiving treatment. We are so proud of Kylee, she is truly an inspiration to us. Kylee's parents divorced and my wife Margie and I adopted Kylee, and we are blessed to be able to care for her. Again, we can't thank you enough for what you have done. And congratulations to Kensie, it was great listening to her for it gives all us hope. Let's find a cure for this dreadful disease.
Joe

My niece was diagnosed with Juvenile Myositis at age 2. She is now seven and lives with it everyday. She is a strong and special little girl and it kills me to see what she has to go trough to be treated. I just want to THANK YOU ELLEN for raising awareness about this rare disease and I hope that one day we can find a cure.

Ellen,
I personally don't have the time to watch your show, but the few times my wife has drawn my attention to your show, it definitely has shown me that your heart is in the right place and you're doing very good things for many people. This morning my wife told me about your episode yesterday and of course it brought tears to her eyes. I'm guessing it will to mine as well once I'm able to view the video clip with Kensie. My son was diagnosed with Dermatomyositis April 21, 2005. I'm glad to tell you he is doing very well today. I won't go through all the details of our last 3 years, but there certainly was a roller coaster of emotions throughout that time. Some are affected more severely than others by this disease and my son I consider to be one of the lucky ones. At his worst, he difficulty walking, sitting, dressing himself and could not run and play like other kids his age. I never heard of this disease before my son was diagnosed and it took me nearly a week to remember the name of it. Nobody likes to be sick, but watching your child go through the things these children endure with this disease and the side effects of the medications is truly difficult to watch. These kids have to live with this everyday. Daily physical therapy, emotional therapy, sun screen "everyday", leg braces at night, countless blood tests, steroids and the tremendous weight gain associated with that. It's hard enough being a kid, but then to have all these things thrust upon you. My son Brody is my hero!! He's gone through all of this over the last 3 years and never has complained. In fact, I think this whole experience has made him a stronger person. It's unfortunate that he's had to go through any of this, but he has taken it all in stride and truly been an inspiration for me. Hopefully your show yesterday raises awareness of this disease and encourages others to donate to the cause to fight this uknown disease. Only 5,000 children in the US have it. There is a web site called CureJM.com. Please direct your viewers to this site for education about the disease and also opportunities to donate to the cause.
Bruce Kutch, one very proud father.

Ellen,

I have been a fan of yours for quite some time. You are one of my favorite comedians. But now Ellen you more than a comedian or talk show host, you are an inspiration. What you have done for my cousin Kensie is just wonderful. I have never seen her so happy. To be able to grant her wish, and then continue to give like you have, that is just so kind of you. Thank you so much for your kindness. What you have done for Kensie, and the rest of her family, will always be a highlight in our lives. Thank you again.

Keep Dancing!!

ohhhh you touched me again...i wanna say thanks god for sending us god angels like you...ellen...youre really amazing..hah

I wrote yesterday after seeing your show but somehow it wasn't posted here. Thank you so much for introducing Kensie Montallo, what a brave young woman she truly is> I was diagnosed with Polymyositis in June 2004 at the age of 62, what a diffcult trip this has been, there is no cure for Myositis and there are four forms of this disease. I belong to a group called The Myositis Assoc., and have meet many people living daily with one form or another of Myositis. Its a constant battle and no one seems interested in bringing a voice to our cause. I have written you several times but had no response but hopefully by having Kensie on and talking about this disease and how it has affected her life will help others to know that these diseases are out there. And not enough research is being done to find a cause or better treatment plan. Not enough medical doctors even know how to recognize these diseases in time to prevent permanent muscle damage. I too would be so honored to meet you but I know that will probably never happen, but you have helped so very many causes and we would be very thankfull if you might consider being a spokesman for the Myositis Association.
Please take the time to learn about the 3 other forms of this disease and acknowledge our requests.
I was foruante in that if I had to be hit with this disease that nearly cost me my life on 9/7/04 at least it was after my children were grown. I will keep Kensie, her mon and you in my prayers. But I beg you please do not let all our wishes for your help fall on deaf ears. You have the power to help everyone livig with Myositis.
God Bless you, you truly are a loving and caring person. I so hope to hear back from you and would love to be invited to be on your show to mention the other forms of Myositis.
Go to the tma.org and learn about these diseases.
Fay Stancliff
Jacksonville, Fl.

Dear Ellen,
Thankyou so much for having Kensie on your show. I'm sorry I missed it, but knowing that you let her share her story is comforting. My name is Alexa Penn and I was diagnosed with Dermatomyositis about two years ago. I was eleven now I'm turning 14. The first time I was sick, I went through so much. I struggled with depression. Kids at school would make fun of me for being "different". This was because of the weight I gained. They said things like, "DId you eat balloons for lunch" or "she looks pregnant". I always figured during this time that it was my fault. I dont know how I managed to stay at school, being so weak. I would cry everyday and yell at my family. It wasn't my fault I couldn't control myself. Then, I began writing to another JDM patient Danielle Moruzzi. This helped me a lot because her case was a lot worse than mine. When I would talk to her my depression started to go away. Then, I went to NY and we met in person. She even came for my bat mitzvah!! She is one of my best friends, because she is the only person who actually understands the pain. I got better within a year, and I was living it up. I was getting carried away. Then, I got 3 sunburns. That was that. I reflarred with in 6 months, and started this process all over. But it was worse. I was weaker than before, and had to be homeschooled. I missed school for 3 months (the beginning of the school year). I felt neglected and inclosed. But then I began writing and I was determined to make the second time the best. Once again, I was on a high dose of steroids, methotrexate, and IVIG, but this didn't stop me from being me. I was happy for the first time. I figured that god didn't think my journey was enough the first time around, he expected more from me he new it could be better. So as I am getting better, back at school, I am happier than ever and more proud than anyone could say. I hope you truly know how much this particular show you aired meant to all of us dermatomyositis patients. Best of luck to all JDM people reading this. =D
Love,
Alexa xoxoxoxox

Ellen,
What a special thing you have done for Kensie. You touch so many hearts each day Ellen, but in this show you touched deep. Personally, I've never heard of this particular illness. But now that I am aware, I want to help others with it if I can. My daughter has a chronic illness that hasn't been determined as of yet. I know the frustrations and heartaches of watching my daughter suffer day after day and hearing the doctors say "We couldn't find anything but let's try this...." She has had so many tests, surgeries, doors slammed and hopes shattered. I feel Kensie and her families pain. When I seen that sweet girl walking, she looked like each step she took was painful. Bless her heart.
Ellen, you truely are a special person. You show compassion, warmth, love and sensitivity. We love watching you every day. You make us laugh as well as cry on occassion. Thank you for being who you are. Please don't ever change. Love you always!

Dear Ellen,

Thank you so much for raising awareness for Juvenile Dermatomyositis. Kensie is a true inspiration. My son Austin has JDM for 6 years now-- it's a long battle for many parents. It is often that unknown disease that go without any attention or help. Thanks to you Ellen many other parents will be able to connect and learn about Juveile Dermatomyositis. CUREJM is a non profit organization that offers support for parents dealing with this disease. The power of family and friends is amazing. At CureJM, a small group of parents and friends that work together as volunteer and has been able to raise awareness,give parent support and raise money to help us all get closer to one day finding a cure. We have raise money throughout marathons , garage sales, recycling and readathon, you name we have done it. Thank you for giving some attention to an orphan disease that usually goes unnoticed.

Thank you again Ellen--

Thank you so much for allowing Kensie to share her story on your show. I didnt get to see the show until I hear about it on our web site, it is a great support for families with children that have Dermatomyositis. (curejm.com) My daughter Lyndsie was diagnosed 3 years ago with the same disease. She is now 20years old. She has gone thru so much. In and out of the hospital and all different types of drugs. Now she is on Cytoxan, a chemotherapy drug because her dermatomyositis attacked her lungs and caused a lung disease. She has never been in remission. We hope and pray everyday for a cure. Thanks again. Jo Ellen (St. Charles, MO)

Hi Ellen,

My name is Mariam and i am from Cairo, Egypt. It's a long way from the States but i gotta say that i am a big fan of yours. You are a hillarious, kind, down to earth and sincere person...and yes, you always always make me laugh no matter how bad my mood is. You know Egyptians love a good laugh and they love jokes...they are funny people by nature and it takes a really funny person to actually make them smile, which makes you a very talented, funny and just absolutely great at what you do. I think your show is one of the most fun yet beneficial shows on TV and although we don't really get your show on TV alot and regularly, i do constantly watch the mono's and "Ellen in a minute" previews. I keep myself updated with all your news and i do hope that maybe one day i will have the chance to actually meet you in person. This video has really touched me and i know that you will always offer help and support to anyone in need. I travel alot and i have been to the States many times before, so maybe it won't be that hard for me to get my things in order here and just take off to see you :) Take care and i hope you keep doing what your are doing because believe me you inspire and help alot of people...more than you will ever know. Greetings from Egypt :)

Ellen,
Thanks you so much for having the young girl with JDM on the show. I suffer from Dermatomyositis and know first hand how much this young brave girl suffers everyday. Myositis needs more attention. We suffer alone because it is so unheard of but thanks to you, millions now have heard of it. I know that only a small amount of information was passed on to your viewers but its more then they knew to start with. To let you know how unheard of it is, a couple moths ago I had to go to the ER and the treating PA had only heard of it in passing... never studied it at all. I asked him what he was doing trying to treat me then. He had no answer. Most Dr's do not even know what it is. Only about 50,000 Americans have this disease so thank you, thank you, thank you from all of us Myositis people.
I belong to a group on line at TMA. www.myositis.org and this is the 15th year for them. I am doing a fund raiser for them called " Bikers for Myositis" a poker run and cookout on September 21st ( national Myositis awareness day) to get the word out about Myositis and to make some money for research. Now maybe just maybe more people with take part because of you and your show. Thanks again Ellen!!

Dear Ellen and Kensie:
What a great thing you did in making Kensie's dream come true. People with myositis indeed do have a hard life and many challanges to overcome. I couldn't believe it when I saw you two dancing .. for anyone with DM that is an accomplishment for sure.
I was diagnosed with myositis 2 years ago (I'M 54). I belong to the most supportive group on line called The Myositis Association wwww.TMA.com. We support each other and it's a place to go that people actually understand what is going on with us. Kensie and Mom, we would love to have the opportunity to help you as well. Ellen, drop in and read our posts, you'll love it. Full of good humor and lots of love. We have been chatting back and forth about your show Ellen and you have made us happy as well. As this disease is so rare, we get very little coverage in any media. We wish you would adopt us all, or at least adopt our cause and give us some light!!
Thanks for taking the time to read this note and please visit our site and feel at home.
Jenny

Ellen, Thank you for bringing world attention to this rare and debilitating disease. My daughter Kate (diagnosed at eleven, now twenty) also a huge Ellen fan, watched your show yesterday and called me at work to express her sheer excitement at seeing Kensie. For Kate to see on your show that there is someone like herself going through what she has gone and continues to go through is truly a wonderful thing. And I thank you for that.
Sue (Canada)

I am sorry to have missed this but heard about the video on your website through the Cure JM Foundation message board.

Thank you, Ellen, for bringing Kensie's inspiring story to light, and thank you for bringing awareness to this little known disease, Juvenile Dermatomyositis.

Thank you, Kensie, for living your journey each day with JDM with such exemplary strength and courage with a smile on your face!

My 11 year old daughter, Gracie, was diagnosed 13 months ago. At the time, she could not walk up stairs, had become extremely weak, and had developed contractures in her elbows and ankles. Agressive treatment and lots of physical therapy has helped so far.

The journey is not over. But, Gracie, like Kensie, faces each day with strength , joy and a smile on her face! She loves art --that has been one of her expressive tools through this.

I think we have much to learn from our children...

We are blessed that a Center for Myositis, funded in part by the Cure JM Foundation (www.curejm.com), has recently opened at GW Hospital in Washington, DC. We were able to see specialists from the National Institutes of Health that are national experts in Juvenile Dermatomyositis, Dr. Rider and Dr. Mamyrova.

The Cure JM Foundation is an all volunteer, 501(c)3 organization dedicated to finding a cure for Juvenile Myositis, while also providing support and information for families. Much of their funding comes from family and friends of those with JDM. (www.curejm.com)

Praying for a cure,
Annie & Gracie
Washington, DC

I saw Kensie today on your show and she is absolutely precious and for someone so young to have the poise and courage that she does is awesome. Ellen, you make me proud. You really do give alot of yourself and you do it not for the accolades but just because of your heart, my lord if only the majority of the world was a little like you, maybe we would stand a chance. Anyway, thank you for being such a lovely person that alot of young people can look up to. I will always continue to watch you and tell everyone I can what a terrific person you are.

I would like to take the opportunity to thank everyone for your wonderful comments about my daughter, Kensie.

To write a simple "thank you" to Ellen and Make A Wish Foundation for everything they have done for Kensie seems so inadequate. Words alone cannot truly let each and every person who made Kensie "famous" know how deeply moved I am.

As a single mom, helping Kensie live each day with this disease is a struggle at best. As I have read comments from so many people whose lives have been hit by this disease, I am so sorry for you and your families. Yes, there are good days and bad days, but the pain these children go through cannot be understood by someone who has not witnessed it for themselves. It is my sincere prayer that having been given this incredible opportunity for Kensie to bring this disease to a national audience, that others will feel inspired by my beautiful daughter. Equally important is that perhaps this will open the door for those who know the physical, emotional and mental hardships on these children and adults to communicate with each other as a form of support and caring.

I can tell each and every one of you who have a loved one with a chronic illness, I understand! I know the huge financial hardship this places on each one of us as the parent or spouse. Now that Kensie has turned 18, and once she graduates from high school, my insurance will no longer cover her. I am sure that there are many others who are faced with this prospect which just adds another layer of worry and concern. Again, as a single parent, I understand.

I would love to communicate with anyone who has questions about this disease, treatment Kensie has gone through or what has and has not worked for her. Please, let's reach out to each other. PLEASE EMAIL ME AT isabelle@vtc.net. I promise to contact anyone who contacts me.

And please remember, "If God has led us to it, He will bring us through it."

May God's blessings be with all of you.

ELLEN AND MAKE A WISH FOUNDATION - THANK YOU FOR MAKING KENSIE FEEL LIKE A STAR! I SHALL BE FOREVER GRATEFUL.

Kensie's Mom, Cindy

Kensie Montalto..You are a truly amazing young lady.

A huge bunch of sun flowers just for you!!

I am Kensie's Aunt and would like to also say THANK YOU TO EVERYONE who is responding to the show today. I have been with Kensie and her Mother through the beginning and until you have lived this disease you have no idea what the child and the family go through. Kensie has truly been through alot, she has had 9 surgeries and missed alot of fun and school. She can not do the same things as other kids her age so her social life has suffered. Reading all the comments about the other children with this terrible disease is so welcoming because now maybe you kids can get in touch with each other and know that you are not alone with this. In Kensie's young life I have never seen her shine and smile like I have this past week, this I THANK YOU ELLEN AND MAKE A WISH FOR!! I hope this can also help these children get awareness and get us all out there in the media to help!! The medical bills alone are unbelievalbe for these families. Let us all try to do something and help these children!!! Someone wrote how happy this wish made Kensie and maybe it will change the way she feels about herself and I truly pray you are correct, because to see her in this happy state I must say I have never seen. Kensie is a very strong and determined child but inside she is not that person. So Ellen I thank you so very very much for making this child feel so very special and I hope you are also rewarded some how some way for this!!! I will never forget Kensie's face and the happinessshe has felt even if it for an hour, a day or even a week!! AGAIN THANK YOU EVREYONE!! As soon as the famous Kenise is feeling better (she is very ill at the moment she and her Mom will be responding to you all!!!

The most amazing thing is that she gives hugs and means it more than you or I know!

My daughter was diagnosed with Juvenile Dermatomyositis at age 7. After 2 1/2 years of treatment she went into remission. She is now 13 years old (14 in June) and is healthy with no lasting problems. It was a very difficult time for all of our family but with a lot of prayer God saw us through. We had a wonderful doctor in Portland who was very knowledgeable about JDM. Kensie is a beautiful young women and I wish the best for her.

Traci-Oregon

loved the video!!! That was a great special moment!!!! You truly made Kensie's day!!... week... It made me happy!!!!!!!!!!!!!!!!!!!!!!!!!!!!

people always ask "If you could change one thing or do something over again.. would you.. and what would you change?" Most of the time... people always say.. NOTHING!!!!! WHY???? 'cause they wouldn't be where they are in their journey.. be the person they are at the time of the question...

Life is hard... and I look back on my life and I wouldn't change a thing... even all my painful times. It sucks when you go through it a lot. Just when you think you know yourself.. me personally you find.. your a lot stronger than you think!!! I like a saying ... "God doesn't give you anything you can't handle." With God all things are possible and if God is for us who can be against us.. I take means... don't let others dictate who you are.. or how to feel. I always get told let it roll off your back like water on a duck. No worries and think positive. My personal montra! :) You have to sometimes to not go in dispair.. but sometimes you fail.. but just don't give up! Another day.. the past is the past.

That video and what Ellen's actions.. words.. thoughts for Kensie really made me happy and I almost cried...

k... now I have to get some sleep.. but just wanted to write in! :) Must get sleep!!!.. but can't .. my mind is racing.. AGAIN.. and I get up in ... ummm 3 hours!! Last night I think I only got 2 hours!! LOL This is another story...

hugs,
T

Ellen, thank you so much for having Kensie Montalto on your show. I was diagnosed with Dermtomyositis when I was 7 - having suffered from it since I was 3. I'm now 33 and off all meds. I'd love to be in contact with Kensie and anyone else that has suffered or does suffer from this disease. It truly helps to have people to talk to that know what you are going through and dealing with on a daily basis. Thank you for bringing Dermatomyositis out into the world. Go Ellen!!!!

Ellen - thank you so much for raising awareness for Juvenile Dermatomyositis. My son was diagnosed with Juvenile Polymyositis (an even rarer form) at age 11, went in remission during high school, then it came back again. He is now 20, in college, and is almost in remission again. Our family is working hard through the Cure JM Foundation www.curejm.org to raise funds for this "orphan" disease so others may be treated as successfully as he was. We are lucky to have a Center of Excellence in Juvenile Myositis at Children's Memorial Hospital in Chicago. Awareness and immediate aggressive treatment is the key. Thanks for the help, you've made a difference.

I sent in a comment but forgot to leave my email.
It is heatherhodd@hotmail.com

thanks
Heather Hodd

Hi Ellen, I am a 46 year old woman. In Sept 2006 I knew that there was something really wrong with me.I went to the doctor and he sent me directly to the hospital where I was to spend the next two months of my life. I was diagnosed with a disease called Dermatomitasitus. I was not able to walk, feed myself or dress myself. I had the skin rash all over my body and it really attacked my muscles. It took alot of physio for me to get back any strength. I was told at the time that 5 people in a million have this and that 12% of these people have cancer associated with it. I went though several tests and biopsy's to find out that I had Ovarian Cancer. As much as I hate this disease I am thankful for it because they may not have found the cancer. I went through many months of Chemo and am happy to say that I am now a cancer survivor. My biggest problem now is that it is hard to find any information because it is so rare that the doctor I have doesn't know anything about it. I would really like to have my email forwarded to Kinsie or any of the other people who have it so I can ask some questions. If you could post my email I would be so happy to hear from you.Thank You so much for having Kinsie on your show. It was like winning the lottery to know that there others out there like me. Ellen you are the best.
Heather Hodd
Saint John, NB, Canada

Thank you for making Kenzie's wishes come true, Ellen. I developed adult onset Dermatomyositis, 15 years ago. I first had the rash, which was initially thought to be an allergic reaction to some chemicals at work, then I went from feeling a bit achey, like I was coming down with the flu, to being so weak within 2 weeks, that I couldn't brush my hair, pick my head up off my pillow, even swallowing was a major issue. I was on transplant patient doses of prednisone, to shut my immune system down, for over 2 years, before it finally began to go into remmission. I have a lot of permanent damage to my bones, muscles, and internal connective tissues. I live with chronic pain, 24/7. I wish Kenzie the best of everything.

Ellen I think you are an amazing woman, and I hope that one day we all can learn what you already know that everyone needs someone to love them. I watched your show every morning and everytime you dance my 2 year old dances with you. You are beautiful and I hope that GOD bless you and your love ones in every way possible.

Ashley

God Bless and thank you Ellen for having Kensie on your show today!! She is a true inspiration for young girls that have the same disease. One of my twin daughters was diagnosed with dermatomyositis three years ago-Mollie is
eight years old. Thank you for posting
comments so that we can let others know how
we feel.
Blessings,
Rebecca

Dear Ellen, and Everybody!
My name is Jasmina and I'm 24. I was a perfectly healthy little tyke born in Bosnia. When the war started my family and I moved to Austria as refugees. At the age of 11 we finally moved to America. Shortly after I began feeling weird, started ditching classes esp PE. Everyone at school thought I was one lazy kid, when in reality I loved school. Anyways to make a really really long story a little short I was finally diagnosed with Polymyositis. The night of my biopsy I was put on steroids and come to find out steroids treat the rash that is accompanied with Dermatomysitis. In a period of 6-7 years I was misdiagnosed and known as the only child with the adult form of myositis. Children develop Dermato and adults usually develop Poly. Anyways at 19 I switched to my current doctor, who reviewed all my medical history, he stopped my steroids and I developed a rash; he concluded that I was in fact misdiagnosed and had Dermatomyositis. It's been a difficult 5 years since then, but I am lucky.

I did NOT realize that this was as common among children as it is with adults.

If anyone, parents, kids, whoever wants to talk or someone to answer questions don't hesitate to send me an email: jdzafic@cox.net

Thanks and good health to everyone,
Sincerely Jasmina

Responding to Kami Flack- My treatment involved almost six years of IVIG along with weekly IV's of SoluMedrol. My body didn't respond to much else either. I eventually was able to respond to SoluMedrol and gradually decrease the IVIG amounts. I'm so sorry to hear about your son's surgeries, and I hope for the best for your son.

I know I wrote this before, but I would really welcome any contact from anyone with questions or want to talk about experiences with me. It's nice to not feel alone for once with Dermatomyositis. My email is Cass_817@hotmail.com.

Thank you so much, Ellen and Kensie. You opened the doors for some of us to contact each other, or, in the least, realize we really aren't the only ones with Dermatomyositis. :)

Hello -

I came here to the site because my mother watched the show. I only wish she had called me!

I have been suffering with the exact symptoms as this beautiful young lady. It has always come and gone over the years but has been horrendous the past 3 years with no answers or relief.

I do have all the elements including the positive ANA levels. I was diagnosed with possible lupus 22 years ago (I'm 44 now) but I suffer this unsightly rash with all it's pain and other symptoms including the throat spasms.

I thank you so much for all this wonderful information as I wander through life with a smile not knowing what is wrong with me. Thst is so frightening! Although this is not something I wish to have - I would almost bet my bottom dollar on it. I will be contacting my doctors immediately.

No I'm not panicked for I simply want answers.

Again, thank you soooo much. I actually have tears of relief that I can finally put a finger on this.

Kensie, thank you so much for sharing your story and positive spirit! I wish you so much success with your future!

--Linda (NY)

Hi Ellen,
I was watching today and was surprised to see that Kensie has the same disease that my daughter was diagnosed with this past March when I took her to the dermatologist we had thought that she had an allergic reation to some plastic bags at the supermarket that she had started working at in October she had gotten a rash across her nuckles and then she had a biopsy done and it came back positive for the dermatomyositis thankfully she hasn't had the muscle involvement but we go to the hospital every month and she has blood test to make sure there is no involvement of the muscle. If anyone would like to contact us that has the same disease maybe that woukd help her she is 15 she will be 16 in Sept the only place she has the rash is on her nuckles still and a little bit on her elbows but that is it and she is only taking meds for the rash. I'm glad she got to see someone else with her same disease on your show

ok- so that made me cry- i missed it- so glad i got to see a piece...
you rock!!

Hello,

Sorry we missed the show with Kenzie. We were directed to this website and reveiwed all the comments. We have a 13 year old son who was diagnosed with Dermatomyositis 15 months ago and has recently been hospitalized for severe muscle weekness. After a heavy dose of Pulse steroids to treat severe Gastro Intestinal inflamation, his bowel perforated resulting in major abdominal surgery. As his body has not responded well to steroids he is currently being treated with Intravenus Immuglobulin (IVIG). We would welcome any information on successful treatments that others have experienced.

Ellen DeGeneres is an amazing person, she is my favorite and I hope I can meet her. Ellen is as best as they get, she is really funny and kind

You did a great job on your show in Chicago. I like all of your guest. This girl Kensie that you had on show today. You should have be your new daugther. Hope that your mom has a great mothers day. Take care John Beach

Ellen
You are a most amazing lady...your compassion and love is overwhelming to me sometimes. You made me cry today watching you interview with Kensie...what a wonderful, brave young lady...and what a wonderful lady you are for making her dreams come true. You are truly the only reason I have a tv set!
Keep it up
Love
Sandy

Kensie - if you are reading this I just wanted you to know how much your story inspired me. I am 17 and your courage just really touched me. I cried when I heard you were going to get to go to the ACM's cause I was just so happy for you! I love Kenny Chesney too! Anyways, I just wanted to tell you that I really admire you. I don't have any sort of illness, but I'm not nearly as confident and brave as you are. Good luck with everything you do and have fun at the ACM's!!

awe that was so sweet i love the ellen digeneres show i always watch it, i love your dancing i never really heard what the mother said ellen i am your biggest fan im only 9 years old your my favirot tv star ! :)

~JayleneHollohan~

Hurray for any young person that faces medical or psychological challeges while in school, because it can be as painful and just as relentless as their condition. My son has Asperger's Syndrome and it has been quite a journey and he is just finishing up the sixth grade.
Ellen, thank you for recognizing how much self esteem has to do with coping with disese or diorders. An opportunity like the one you gave Kensie, could make an enormous difference in how she views her life circumstances.
That was thinking like a mom Ellen.

This made me cry! Thank you so much for doing this, Ellen. I was diagnosed with Dermatomyositis when I was 2 also, and I am now 20, like Kensie! Seeing her walk on stage made me think of myself, my arms and rash are the same way as hers. I would love to contact them, if anyone knows a way I can just reply and I'll check back. Or if anyone would like to contact me that'd be great, too!

XOXO
Angela

Hi, I just watched the ellen show and saw Kensie! OMG, I am soo inspired. I have been fighting something for quite a while now and the doctors have called it PSORIASIS and I have felt for a long time now that it has been something else! I am 37 and it is not fun!! sometimes my bones ache soo bad it gets too hard to get out of bed to pick up my crying baby while my husband is at work,We just moved into a new home and have a staircase now,there are times when I can't make it!! I have a 7 year old and an 18 month old and it's beginning to get even harder to keep up!!!
I am soo embarssed to go with short sleeves out in public and I can't even tell you when the last time it was when I wore shorts!!!and I live in California!!!!
I am going to look into Dermatomyositis!!!
Maybe just maybe I can now put a finger on this!!
Thnks everyone!!!

You dont know how big this is. I attend school with Kensie and we were all SOOO Excited to see this. She missed her Senior prom to go with Ellen and Gosh was it worth it. We plan on watching the show in choir class tomorrow, but gosh you dont know how happy this has made her.

Thank you for raising awareness of this disease and granting Kensie her wish. I was diagnosed with dermatomyositis as an adult and I can not imagine how hard it would be as a teen. She is a beautiful girl and on TV I could not see any rash-- please tell her that. I too have had trouble with the rash along with muscle but the rash does make you very self conscious. All the best to Kensie.

Hi Ellen!
I saw your show today, and I could not believe it when Kensie's Mom said she had Dermatomyositis. I was diagnosed with it when I was 12, and even though I had great friends, it was hard going through it when no one else understood what it was like. I would really like to contact Kensie or Kate from Canada (below) if that would be possible. I am 22 now and would like to talk to others my age who have experienced Dermatomyositis. I would also like to contact younger children who are going through it now and have questions on what it's like. It's a challenging disease, but as Kensie shows, it can definitely make you a stronger person. :)
Thank you Ellen!
Cassie-Eau Claire, WI

Dear Ellen, Thank you soooooooo very much for helping Kensie !!!! My son was diagnosed with the same disease when he was 6-1/2 years old. Because it was a very rare disease, the first pediatrician that saw him gave him very high doses of Prednisone that, amongst many health issues made him gain so much weight that within six months I had to buy men's size 38 waist pants for him. I finally wised up and took him to Boston Children's Hospital where the first treatments were unsuccesful; then we agreed to a "plasma pherisis" (I am sure it is misspelled) treatment - and finally he went into remission right after his 12th birthday --- He is now 30 years old - 6'2" and, to me, gorgeous.

The only reason I write is because I know what Kensie & her mother must have and are going through -and what you are doing for Kensie is JUST A BLESSING! But you are such a GREAT HUMAN being I am not surprised by your actions....

Thank you again for your WONDERFUL SHOW. Keep up the SUPER EXCELLENT JOB!

Best regards,
Cecilia - Miami, FL

Ellen,
Enjoy watching you, just about any time. Kinsie's Story gave me tears,at 65 that takes a lot for a male. Some one up there will love to have you when it is your time.
Love your Show!

Dear Ellen,
Thank you for honoring Kensie today, and also for raising awareness about dermatomyositis (JDM). Since JDM is so rare, children who are diagnosed often feel alone in their experience. Your show today will help every child with this disease. My daughter is 12 and was diagnosed with JDM about 2 years ago. We are hopeful for her remission. Raising awareness is key - we hope to raise more funding for research so we can cure JDM! Thank you Ellen. We are so grateful for the laughter and happiness you bring to our lives.

What a wonderful video story - a pure defination of admiration, repect and love between two people...I say go for the adoption, Ellen.

My daughter was diagnosed with Juvenile Dermatomyositis in 2002 at age 6. It is a rare autoimmune disease where the body attacks itself, the muscles and skin. She spent over 4 years on high does steroids and low dose chemotherpy to knock out her immune system in hopes that it would start back up again and work correctly. She has been in remission since December! For more information on this disease please visit the www.curejm.com this is an organization that has been set up entirely by parents, grandparents and family memebers whose children have this disease.

Hi Ellen!
I love your show and watch it every day. Today I was watching when I saw Kensie and learned that she dermatomyositis. I was really suprised since I am 20 and have never seen anyone else with this disease. I was originally diagnosed when I was 11, but luckily most children can grown out of it and by the time I was 16 they said it was gone. Unfortunetly this past winter it came back again and chances are I won't grow out of it this time. But Kensie's story was awsome and I'm glad you brought attention to the disease since not many people have heard of it!
Kate - ON, Canada

Ellen I am writing you about the young girl that was just on your show. Please tell her mother to get some cold pressed castor oil and rub her all over in it. No I am not a nut. I have used it for over 35 yrs. I had a tumor on my side and was to have suegery but after 3 weeks of putting the oil on my side with a heating pad the tumor was gone. my grand-daughter had a severe red rash on her face and i put the oil on her and 2 days it was gone. it wil take away a lot of her pain and it will make her bones stronger. I broke both my ankles and used it on them . I have used it on my daughters horse when she tore her ankle up and the vet said he couldnt help her, after 6 weeks the horse was back to normal. If you have ever heard of Edgar Cayce then you will understand about the castor oil. Castor oil in latin means the hand of God. Please it will help your adopted daughter. It will help her pain and make her bones stronger. Please ,Please, It will help her pain so much. B.C.

I live in Chicago and my sister is a Wish Kid. We had the great oppurtunity of seeing Ellen and Kensie at the Wish Ball held at Lincoln Park Zoo last weekend. What an incredible host, Wish Kid,wish, and event that MAW pulled off!

THE POWER OF A WISH!!!!

Mary - I am from Upstate NY also and realize every day in my daughter's life is so important and we've learned not to take anything for granted.

Some people do not realize how a simple task as walking across a stage or skipping or riding a bike can affect someone with this disease. It could attack any muscle.

My daughter's disease this time has the form of muscle weakness & arthritis- we are wishing for a bath makeover for somewhere she can go to get relief. The only thing is we hate to ask Make a Wish as she is young and may need more later in life.

God Bless you

Ellen,

Thank you for making your audience aware of dermatomyositis . My sister was diagnosed with it as an adult.
Kensie is a beautiful young woman and you made her feel as special as she seems to be when she speaks on camera.
It left a warm spot in my heart.
Thank you for making her wishes come true.

Just Dream for Miracles - My heart goes out to Kensie as my daughter and I watch this. She is 10 and has the same disease. God has blessed us in to many ways.

Thanks Ellen for making Kensies wish come true.

I was surprised to see Kensie on Ellen with this disease. My little sister had this disease and passed away when she was fourteen. This disease hit her heart instead of the muscles in the limbs. She was a very happy teenager and would do anything for anyone. Watching Kensie walk across the stage made me think of my sister. She also had rashes on her arms, legs, face, back, and even her feet. I miss her very much. I hope Kensie has a long and happy life. Good luck Kensie. May God bless you.

God Bless you Kensie. What a true inspiration you are. I hope all those Bullies that teased you realize what a big mistake they made. You are a superstar. I hope I can meet you, what a role model you are for my baby girl. You can be the little sister I always wished for. Good Luck on the Red carpet.

Mary, Chicago, IL

Please delete my phone number from the last post... didn't realize it was on a blog - thought it was an email.

This story about Kenzie made my heart smile. My little girl (age 9) was also granted a wish from The Make a Wish Organization. The people who work for Make a Wish are Angels on earth. They made our trip to Disney World magical. Also the people like Ellen who help grant the wishes are also Angels. They make a child or young adult's wish come true and you have no idea how much it means to them. Ellen is a true giver. I know she makes me smile each day. I was recently recovering from my 5th back surgery. Some days the only time I felt the least bit happy is when my kids and I watched Ellen. Thank you Ellen for everything you do for all the people. Take Care Terri.
P.S. Kenzie you are a beautiful girl!!!!!!

My heart goes out to Kensie as i have been trying to overcome the same disease for 6 years and I am an adult. It is bad enough for me and I was blessed with many years of good health first, so I cannot even imagine what it is like as a teenager. Bless you and we will find an answer - I search every day for the solution.

The name of the disease that Kensie has is dermatomyositis. It's very rare, and affects children, and also adults.

I WAS UNABLE TO CATCH WHAT HER MOTHER SAID WAS THE NAME OF THE DISEASE PLEASE E-MAIL WITH THIS THANKS