There IS hope! I was diagnosed in 2001 when i was 10 years old, im 19 now :D i was seriously ill, in hospital for 8months and it took me 2years until i was in remission, i had major complications including vasculitis in my brain and i had fasculitis in my abdoman and i had to have a stent put in my kidney. The only thing i would reccomend, is getting cancouling for a child that is/has been seriously ill. I didnt and it left alot of anger and guilt because i'd 'lost' 2years of my life.
I was in a similar boat at her age. I am frustrated because this disease can pretty much destroy a kid's life or an adult for that matter, and nobody seems to know about it or care enough to fund research. I can tell you, it's so painfull and devastating that I would give every last penny I could possibly provide to research.
i am 16 years old, i was diagnosed with this not even a week ago...i feel her pain and i havent started treatment yet but i am not doing well, my doctors think its in my lungs already and i am flying out to john hopkins medical center in maryland the week school lets out, not the way i want to spend one of my last high school summers with my friends
I am so sorry to hear this. Thanks for sharing. You are in our thoughts. The only thing I can offer is the news that our daughter is doing well with the hope that you can get there as well. Good luck at Johns Hopkins. Be good to yourself - like you said this is your last high school summer - so even though you are given this profound challenge, try to be good to yourself.
My 8 yr old son was diagnosed with JDM almost 4 yrs ago. Surprisingly, we discovered as well that there are two other children within 10 miles from where we live battling this "rare" disease. Makes you wonder if the trigger is environmental or if the disease isn't as "rare" as they say. My thoughts are with you in hopes of a permanent remission soon!
There IS hope! I was diagnosed in 2001 when i was 10 years old, im 19 now :D i was seriously ill, in hospital for 8months and it took me 2years until i was in remission, i had major complications including vasculitis in my brain and i had fasculitis in my abdoman and i had to have a stent put in my kidney. The only thing i would reccomend, is getting cancouling for a child that is/has been seriously ill. I didnt and it left alot of anger and guilt because i'd 'lost' 2years of my life.
widdawiddawaldo 9 months ago
i thought this was JDM, like the cars
SuperPitbullMan 11 months ago
CureJM is in the running for a $250,000 grant from the Pepsi Refresh Everything Project. Please Vote for Us!
millennyem 1 year ago
I was in a similar boat at her age. I am frustrated because this disease can pretty much destroy a kid's life or an adult for that matter, and nobody seems to know about it or care enough to fund research. I can tell you, it's so painfull and devastating that I would give every last penny I could possibly provide to research.
Sciencelover5 2 years ago
i am 16 years old, i was diagnosed with this not even a week ago...i feel her pain and i havent started treatment yet but i am not doing well, my doctors think its in my lungs already and i am flying out to john hopkins medical center in maryland the week school lets out, not the way i want to spend one of my last high school summers with my friends
kitkat43040 2 years ago
Hello There,
I am so sorry to hear this. Thanks for sharing. You are in our thoughts. The only thing I can offer is the news that our daughter is doing well with the hope that you can get there as well. Good luck at Johns Hopkins. Be good to yourself - like you said this is your last high school summer - so even though you are given this profound challenge, try to be good to yourself.
millennyem 2 years ago
Thanks for your comment and thoughts. I hope your son is doing well.
millennyem 3 years ago
Hi,
My 8 yr old son was diagnosed with JDM almost 4 yrs ago. Surprisingly, we discovered as well that there are two other children within 10 miles from where we live battling this "rare" disease. Makes you wonder if the trigger is environmental or if the disease isn't as "rare" as they say. My thoughts are with you in hopes of a permanent remission soon!
Lisa21015 3 years ago