*My 13 yr old is an old lady that turns purple*
My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Friday, January 27, 2012
Would you help if you had the opportunity?
Do you have RA? Or does your child have JA? Are you tired of hearing things like "Oh, I have arthritis, too! In my pinky sometimes", or "Oh yeah, Aleve really helps me", or better yet, "Kids can't get arthritis! Are you sure that's what's wrong?" Have you ever wanted to find a way to help but, Arthritis Foundation walks aside, you haven't been able to find a way to help?
I've said recently that it's an exciting time to have arthritis. People are getting tired of hearing those comments. People are tired of doctors not understanding. People are really thinking that Rheumatoid Arthritis should never have been called arthritis. WE are tired of the stereotypes, the stigma associated with it. We are demanding change. Do you want to help? Here's how.
I volunteer with a new non-profit, the International Autoimmune Arthritis Movement. We are recruiting volunteers to help with tasks- all by using your computer. We are trying to get the phrase "Autoimmune Arthritis" out there. The first step to coining a phrase is to actually get people to use it! This will help a lot. But there are other things, too. Do you also write an arthritis blog? You can be a blog leader! Or at least allow a link to your blog. Are you great with researching? There have been opportunities for that. There are so many things that can be done- all by sitting in your home at your desk, or wherever you are.
right now we are looking for all sorts of pictures for the newest
venture. Pictures of body parts, people (adults and kids) getting
infusions or injections, rashes from your autoimmune disease, or
anything else that can help to accurately portray the real faces of
arthritis. Does this sound interesting? The first step is to email Tiffany at firstname.lastname@example.org. She really asks for very little of your time, but that little bit can make a big difference.
***Thank you SH for reminding me about the pictures!