Elsinosis: Living with Cystinosis
A real life account of beautiful Elsie and how she lives with cystinosis
At the end of this last year in November we were fortunate enough to have an appointment with a biochemical disease doctor, Dr Galina Nesterova, who just so happens to have a lot of experience treating people with cystinosis. It was so amazing to finally be able to talk with an expert in the field… Continue reading The Year Ahead
When it came to getting our insurance company to cover all of Elsie's medications it was pretty much a nightmare. And it seems to be that way for a lot of cystinosis families, due to the rareness of the disease and it's medications. After a couple months our insurance did finally cover all of… Continue reading Dealing With Insurance
