Early Years, Lifestyle

Is it Terminal?

Not long ago cystinosis was most definitely a terminal disease. Even up until the early 90's parents whose children were just diagnosed were told their child would likely not live past 10 years old. But with the introduction of Cysteamine treatment (now a days Cystagon and Procysbi) people with cystinosis are living longer than ever!… Continue reading Is it Terminal?

Advertisements
Early Years, Fun Stuff, Lifestyle

Dream, Achieve, Inspire

Every two years the Cystinosis Research Network holds a family conference where families can get together for a few days, attend the many information sessions by leading experts in cystinosis patient care and children, teens and adults alike can have some fun. Sadly we have not had a chance to attend one of these conferences… Continue reading Dream, Achieve, Inspire

Lifestyle

My Daughter’s Disease is Not Useless Information

Recently a family in the cystinosis community made a shocking and upsetting discovery this past week in something that I'm assuming was meant to be a light hearted gift. We've all seen those bathroom books before, usually full of strange, little known facts meant to elicit a few chuckles. So when I saw a picture… Continue reading My Daughter’s Disease is Not Useless Information

Early Years, Fun Stuff, Lifestyle

Cystinosis Sunglass Day

That beautiful girl in the poster is Abbi, a fun loving soon to be 9 year old living with cystinosis. April 13th is her birthday and to celebrate for the past few years her school has done Sunglass Day, where kids could wear their sunglasses to school in honour of Abbi for a small donation,… Continue reading Cystinosis Sunglass Day

Early Years, Lifestyle

Preventative Bed Wetting Measures

Almost every person with cystinosis also has Fanconi's Syndrome (early diagnosis helps!), which causes, among other things, excessive urination. There's a great diagram in Jessica Jondle's book Roller Skating with Rickets (originally appeared in the Parent's Guide to Cystinosis) that depicts the kidneys as big water jugs missing a valve, where the cystinosis jugs are constantly emptying no matter… Continue reading Preventative Bed Wetting Measures