Below is a link to a site from a neurology magazine dealing with rare and orphan diseases. This may be of great help to many of you and will also prove very interesting to read. This was forwarded from a member of my Myositis team. Would,love to start a conversation with all of you.
hi Endless, thank you for that article, very interesting. When I was quite young we lived across the street from a "Chronic disease hospital" in Brooklyn, NY. It was set in a park like setting and I used to go there and sit on the benches where parents of very sick children would wheel them out for their visits. It left an inedilible impression on me, seeing all these infants and children and teens
living their whole lives with all kinds of deformities in a brick building awaiting visits from their parents if they still had any that came. It had a tremendous affect on my entire life view and career. There was also a ward of infants, one of a kind diseases, and what else can I say?
Thank you for this, endless. CJ's story really touched my heart. Just imagine the pain and agony the parents went through thinking their child was going to end up in a group home by the age of 5. And, he is now active and 14 all because of a proper diagnosis (albeit, very rare) but now there is hope.
I do appreciate your time and effort in putting this together and getting the link. There is a lot of information to digest. This is no "quick read" or beach novel by any means. This is some serious and heavy stuff going on here in our ability to get good, quality care when a rare or unknown disease has been identified. Simply heartbreaking in one respect but progress is coming... not nearly quick enough... but it is coming.
Again, thank you and I will be re-reading this... a lot to take in.
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