Cystinosis Research Foundation 2009 Video
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Uploaded by Natalieswish on May 11, 2009
An introduction into the lives of three families with children diagnosed with cystinosis and the current state of cystinosis research sponsored by the Cystinosis Research Foundation.
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@BlowoutBob Same for me, except I was fortunate enough to not have to have a transplant until age 16 (I'm 18 now). I wear sunglasses when the weather is sunny but otherwise I'm fine - do you take eye drops?
kenningvids 1 year ago
@CertainAsTheSun I do wear glasses because my somewhat poor eye sight, and If its bright enough outside I have normal clip-on sunglasses. Nothing special.
BlowoutBob 1 year ago
@BlowoutBob, do you wear special glasses or sunglasses?
CertainAsTheSun 1 year ago
Does anyone know what the song is at the end of the video?
kenningvids 1 year ago
Well, sometimes the light hurts my eyes :(
BlowoutBob 1 year ago
I have Cystinosis. I'm 18 and I had a kidney transplant when I was 13 ...and to tell you the truth, I feel really normal, it really dosn't give any painful problems. I only met one other cystinosis patient. I hope I live to be 90+years old.
BlowoutBob 1 year ago
my friends baby boy was just diagnosed with this disease he is only eighteen months old. How much harder will this get for them before it gets better enough for thrm to handle?
inspireme22 2 years ago
my mom is friends with jenna and patrick's parents :) i love them dearly.. they inspire me so much <3 they changed my life..
Nickjonasgirl993 2 years ago
My sister had this disease. I loved her dearly and she recently passed away. I honestly know what you are going through. She was the oldest surving patient. She had 2 kidney transplants and was about to have her 3rd. Please never give up hope. Its a hard disease that makes a person in sevre pain.
lynngaff 2 years ago
I love you both Chrissy and Jason and I am ALWAYS here for you if you need to talk....I am very proud of you two also....Isaiah 40:31
but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
ZionzLioness 2 years ago