WOW - A huge thanks to a fellow SJS patient in Vancouver who read my previous post regarding the Autologous Serum Eye drops. They've been having them made in Vancouver the whole time that we have been chasing our tails down to Miami.
I'll call Ian's doctor on Monday and have her follow up, so here's hoping. As soon as we have everything arranged, I'll let you know how it goes.
To contact us or for more information about SJS visit:
Here is my wish list for the day: To get someone on the phone who cares enough to help rather than "passing you on"
The best eye drops to use for dry eye, are autologous serum eye drops. These are eye drops made from the patients own blood and contain all the proteins, nutrients and antibodies of natural tears. Up to now we have been travelling to Miami to have them made so this makes them ridiculously expensive with the cost of flights, hotels etc. Recently I found a Canadian medical article about the drops and I thought this was perfect, because now we could simply have them made locally. I contacted the author of the article, who was very helpful, but since then I have been on this "merry-go-round" of phone calls, constantly being passed from one person to the other. I think I have spent over 20 hours for the answer to one simple question. This is the side of a "'rare" disorder that no-one sees, the hours and hours of red tape and bureaucracy for every little thing - it makes things so unnecessarily stressful. The worst part is that I usually end up being passed back to the the people I called in the first place. If you would like to read the Canadian article, you can find it at: http://article.pubs.nrc-cnrc.gc.ca/RPAS/rpv?hm=HInit&calyLang=eng&journal=cjo&volume=44&afpf=i09-015.pdf
