Cystinosis

[LinkyR]

I'm 29 from Minnesota..I also have the disease...I just strarted back on Cystinamine after not taken it for 15 years...This disease has robbed me of so many things...One day I hope they find a cure

[lynngaff]

My sister had this disease. Please never give up hope.

[MsJorijn]

@LinkyR hello there, i was just on youtube and watching videos of people with cystinosis. i am 33 years old, woman, from the netherlands, with cystinosis. i am having a transplant in 1989 and my son is born in 2005. i am doing great, don't feel sick at all. i am coming to the conference this year in italy. i hope i will meet a lot of new people with cystinosis, to give them hope about pregnancy.

[CHELSKITOWN123]

haha wots up doc

[Lilchef4]

Very touching video I am now 29 with the disease and hope your daugher doe snot have to go through which many of us have.

[miaandjamie]

Your daughter is beautiful. My husband had cysinosis. He passed away in 2005 at 36 years old. He had only started cystinamine therapy about a year before he passed away. The disease was not at all treatable when he was diagnosed. It sounds like you already have her meds under control. Best of luck to you and your family.

[shinyday1987]

i was just searching about this illness and i found your video. my brother has this illness and he is now 11 years old and he is doing fine. he is very active boy he joine his school team for football. we dignoses his illness when he was about 1 y. sorry for my spling mistakes because i'm not english speaker. if you have any qustion about my brothers illness i may help you.

[matt2037]

my beast friend patrick has this disease its really sad

[allinanutshell]

My friend's son has this illness. I've seen how horrible it really is. My prayers are with Samantha, and the findings of a cure.