Not that I/we wish anything bad, just as a caregiver or even patient...these illnesses are so different for everyone. Comparing symptoms as they started, how long you've had them, where you are currently at with your treatments...may help others here to wade through all the different comments. Who knows, we may find some common link currently unknown to us all.
If you wish we could create a autoimmune blog: to gather regions, gender, age, family history, anyother information that might be pertainant to the R & S Assoc. The more info we all have in one place, the more info is available to us all for help. I know how hard it is to belong to The Scleraderma Foundation, R & S Assoc. And many other sites dedicated to giving information, but it is so generalized. This place is maintained by us, the patients & caregivers. It could help us more, than those sites ever will. I hate to say it but the TSF is always looking for money to keep their research moving forward...yes that is important, but as I wrote them and explained, the person they had to represet Scleraderma People wasn't bad at all. Her hands wern't deformed, her face wasn't alarming in anyway. I would have made a better choice for realism.
They were kind enough to write me back and said "they will look into someone who would better represent the population as a whole". If you want the goverment to give money for a dibilatating disorder, you need to show that disorder at it's worse, not someone who barely shows signs of the disease! Thats my take!
