Friends with JDM

My name is Morgan Gaither and I am fourteen years old. In December 2009 I was diagnosed with a chronic illness called Juvenile Dermatomyositis. Symptoms had started to show in late September, and from there it was downhill.The disease presents itself through muscle weakness, fatigue, rashes, and other debilitating indications. Mine started with a heliotrope rash on my eyelids, and quickly progressed to significant facial swelling and muscle weakness.

As this disease is rare and its manifestations can look very similar to other diagnoses, I didn't get forwarded to my rheumatologist until after seven doctor's visits. I was immediately started on high doses of IV steroids and oral Prednisone. In Spring 2009 I was put on IVIG, and since then I have been doing that every three weeks. I haven't been able to stop doing weekly steroid pulses or get off of the oral Prednisone yet, but I am weening down slowly right now. Anyone who has been on steroids will be able to tell you about the terrible side effects; extreme mood swings and endless hunger. I gained sixty pounds when I was put in Prednisone, and because it also thins the skin, I now have deep stretch marks encompassing my entire body.

This struggle has no doubt been the most difficult I have (and I imagine will) ever dealt with in my life. Either way, I am sure it has permanently altered my life, whether physically or emotionally. Countless midnight visits to the ER and prolonged periods of anxiously waiting for test results has taught myself and the ones around me a new outlook on everything.

Right now I am in a better place than when I had started with this. The disease has caused me to become homebound and I have not been in school since January 2009. Currently, I try to go back half days twice a week and re-enter life. I know I am in it for the long haul, but I survive because of the support of my friends and family. Nobody understands this, but we just take it one day at a time and hope for the best.

My name is Emma. I go by many nick-names, such as Lu-Who from Whoville, Lulla-Bell, but mostly just plain Lu. I am 4 1/2 and was diagnosed with Juvenile Dermatomyositis in April of 2009 when I was 3 1/2. I had been showing definite JDM signs for about 8 months. I am one of the lucky ones with JDM, if there is such a thing. Every kid's case is different, and mine happens to be more on the mild side. I don't think it's that easy at all, but I am grateful for having the mild case. 

When I first started showing signs of the disease I was too little to notice the "tell-tale" signs. I was unable to go up and down stairs real well, I didn't hold my head up good when I was being lifted or laid down, I couldn't run and I was unable to ride my new tricycle. Since I was barely 3, not being able to do these things didn't seem like a bad thing to my mom and dad. I'm an only child so they didn't have a comparison, and thought I was just a little behind in motor skills, figuring I'd catch up.

Then a rash started. All the doctors I saw, including a dermatologist, said it was Eczema, but not matter what kind of cream, lotion or oil they put on me, the rash just kept getting worse. It wasn't until I saw my new doctor after I moved that we found out I had JDM. I was hospitalized for a week with painful tests and tons of medicine, but I started showing signs of response within a few hours. Since then I have been weaned off the Prednisone and am currently being weaned off the Methotrexate that I take in a shot once a week. I'm still taking the Zantac, Folic Acid and Plaquinil, which I call my "Nasty Bean" because it tastes so terrible!

I have  changed dramatically in the year since I've been diagnosed. The terrible side effects of the steroids effected my weight, however I was lucky that my low dose didn't make the growth so much that I got stretch marks. I did gain a lot of weight, 55 pounds at the age of 4 is quite a thing to see, but the benefits of the steroids outweigh (ha ha ha) the side effects. I didn't hurt anymore, I started learning how to climb up stairs, hold myself up when going down a slide, and I finally learned how to run like all the other kids. I can't play much in the sun, which is hard living in south Florida, but we find ways to get around that.

Today I'm much better. I'm the slowest runner in my class, but at least I can run. I'm stronger now, I can climb up stairs, as long as there aren't too many, and I can do one step at a time. And I can finally jump on my bed, although my mom keeps telling me not to...

I'm Emma. I have JDM. JDM doesn't have me.

My name is Mason and I was diagnosed with JDM when I was 17 months old. I am now 8 and have been struggling with this nasty disease most of my life.  I showed signs early on that I would have a severe case of JDM.  I have never been off the steroids and only for a short time during my disease was a I able to "be a kid". 

 JDM got really bad starting in 2006.  I became so weak I could hardly walk or sit up.  I started getting lots of tummy aches and eventually my bowel perforated requiring emergency surgery.  I had part of my colon removed and had an ileostomy for almost a year.  Four weeks after getting out of the hospital from the bowel perforation I got PCP pneumonia because my immune system was so weak.  I was in the PICU for 5 weeks.  I gradually got weaker and weaker and my disease started taking control.  I lost my ability to walk and use my arms.  I got cataracts in my eyes so bad that I could not see.  I was granted a Make-a-wish and got to go shark fishing in the Florida Keys, but I couldn't see anything during my entire vacation.  I did catch an awesome shark though!  When I got back from my vacation I had surgery on my eyes to get rid of the cataracts and had lens implants put in.  I can now see really good and I watch the videos from my trip!

After my trip to Florida, I got so much weaker and am now in a wheelchair.  I even got so weak I couldn't drive my chair anymore.  In January of 2009 while on a trip to San Diego with my family, I stopped breathing.  I spent 3 weeks in the PICU in San Diego until I was stable enough to be transferred by plane back to Portland to be with my family.  I spent another 6 weeks in the PICU and a total of 7 months in the hospital and on a ventilator.  In August of 2009 I finally got to come home to my family.  I was on the ventilator for another month and have gotten so much stronger with the help of new medicines and weekly physical therapy!  I can now drive my wheelchair, lift my arms, color, write, kick my legs, and sit up!  My ultimate goal is to walk again. 

I suffer from severe calcinosis which causes large ulcers on my skin.  My joints are locked shut so I cannot bend or straighten my arms or legs.  I get constant infections from the sores even though my parents take every precaution to keep me healthy and clean.  My bones do not really show up on an x-ray because they are so thin from being on steroids so long.  You can really see my calcium deposits, though! 

I do not let this disease control my life.  I am still a happy, funny, courageous kid!  I have accepted my challenges and deal with them as they come.  I have made many wonderful friends in my JDM journey and am thankful for all of them!  I will beat this disease...I will not let it beat me! 

Mason is also a Cure JM HERO.

Mason, our hero, has moved on to bigger and better things.
An angel among us for sure.
He fought with courage.  

My name is Summer....I am 32 years old and this is my story of my struggle with Dermatamyositis.  After 2 1/2 years of infertility, 2 miscarrages, 3 surgeries by the grace of god we were blessed with our miracle daughter Kelcee who is now 3! I had an emergency C-Section Oct. 12, 2006 do to pre-eclampsia and what we didn't know at the time is this disease about to rear it's ugly head.
January 07 I noticed I was getting a scaldy rash! I thought it was escema since I have had it my whole life! By 2008 the rash kept getting worse and was over 90% of my body!
It was painful and itchy! Everytime I went out in the sun I looked like I had been scalded with boiling water! I went to a Dermatologist who did skin biopsies and sent me to a Rheumatologist whom thought I had a mild form of DM and it was isolated to the skin! She put me on low dose prednisone. It helped for awhile and then it started getting worse! I was unable to get off floor without help always in pain!! At John Hopkins, they did an EMG (muscle test) along with other tests and it was BAD! The disease has attacked my upper legs....neck, shoulder, not to mention R/A attacked most joints on left side and a few on right and I have TMJ in the Jaw and and R/A in my throat which causes hoarseness and throat clearing! They put me on Cellcept (what they give organ transplant patients and high dose steroids but my body would not respond to it! I kept getting worse! They finally tried Maximum dose Methatrexate (Chemo drug), Enbrel Injections, Prednisone, Celebrex, and 12 other meds and I am now starting to respond a little to the meds! This is a blessing! I have a looong way to go to get into medical remission! I have a severe case of DM and I was told I may never be able to go off meds and I just pray to god I do because all of these drugs raise the risk of cancer! I am a fighter!

Click Here to read the post of my most recent JH appt. a couple of weeks ago. God has blessed me with my miracle daughter, a wonderful husband and I live life to the fullest! I try to stay as positive as I can! I leave the healing up to GOD!! That is the best hands for it to be left in!!

I have met amazing families through blogging who are in similar circumstances or worse and it is just heart breaking!! I am glad we are able to connect through blogging it is a major support system! It is heart wrenching to see these children struggle with this disease! My heart breaks for them and there parents!!

I feel guilty to feel bad for myself because I know alot of people have it way worse and I am fortunate that I am alive, walking and have my miracle baby!! I was told that it was a true miracle I had her without dying and that I will never be able to have another child! She is my MIRACLE!! I struggled for sooo long to have her now I feel that I am in the biggest fight of my life to get well!!

Sooo if you are still reading my story....I thank you sooo much and I want you to know if you are struggling DO NOT GIVE UP, there is hope, Pray to God, he does make miracles happen, look at me.... try to stay as positive as you can and just live life to the fullest and take it day by day! 

I lean on this bible verse alot: For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future Jeremiah 2:9
Thank you for reading my story.....