Thought I share another aspect about living with a rare disorder! We often travel for care!
Yesterday I had to travel 2.5 hours one way to pick up a medicine that I needed urgently, as this was the closest pharmacy who had it in stock! Thankfully a good friend offered to drive me, as I had just gotten off a 24 hour shift with no sleep!
It took me about 2 hours to call around to find the medicine. My local pharamacist at Publix spent several hours to locate the medicine as well! She was amazing!
Rare disorders = not many doctors know how to actually treat it and university hospitals are our best bet! I happened to live by one and now with the move, I will be driving to Charleston SC for care more often.
Rare disorders = expensive medicines not many people use and hence pharmacies don't keep in stock = driving long distances if you need the medicine that day!
On a plus side - I got to do unexpected sight seeing by car! (Even so I prefer planned city tours when I feel well! )
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