Elsinosis: Living with Cystinosis
A real life account of beautiful Elsie and how she lives with cystinosis
The alarm goes off at 7:20am. I have 10 minutes before my three year old needs her medicine. I hate waking her up for meds, I wish she could sleep as long as she needs. Before I can dwell on this I hear my 10 month old son start to cry, time to get up.… Continue reading I Hope He Knows
I am so super excited to announce that I will be reading a special essay on my somewhat unique perspective of motherhood at the very first Canadian production of Listen To Your Mother! The inaugural Listen To Your Mother Vancouver show will be taking place on Saturday April 30th at 7:30pm at St James Community Square in Kitsilano… Continue reading Listen To Your Mother
Shortly after Elsie was diagnosed with cystinosis I was lying awake in bed one night, my mind full of thoughts and me desperately trying to silence them, when an idea popped into my head. Maybe I should start a blog. I felt scared, alone and broken and hated the idea of anyone else feeling this… Continue reading Advice I Have For Parents New To Cystinosis
Last year I read this post from Taylor's Tale: Why I'm Still Fighting Rare Disease and was shocked by the staggering numbers of patients and issues involved with rare diseases. I have been wanting to do my own research and post something similar ever since and with Rare Disease Day coming up on February 29th… Continue reading We Should All Care About Rare
Tonight the cystinosis community is paying tribute to three young adults who passed away this past week with a worldwide candle lighting ceremony. We've only been a part of this community for about two years but more losses have been felt than I expected for such a rare disease. Although I have not known any… Continue reading A Loving Tribute
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?
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
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
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
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
Elsinosis: Living with Cystinosis 