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
Tag: rare disease
Finding Out About Cystinosis
Cystinosis? What the hell is cystinosis? Elsie was born a bright, beautiful and large baby girl (8lbs 11oz) who immediately made everyone that met her fall in love. As our first child, Dave and I were in for a sharp learning curve. You mean she needs help to fall asleep? But by 2 months we… Continue reading Finding Out About Cystinosis
Elsinosis: Living with Cystinosis 