Anyone who knows me – lifetime friends or new acquaintances – will tell you that I’m very passionate about raising awareness, and funds, for special causes. We all have a cause that is near and dear to our heart. Mine is my family, and their health.
My daughter Ally was diagnosed at age 13 with a form of arthritis called Spondyloarthropathy. It has changed the way she – and I – go about living life. She is my inspiration and has dealt with this condition by being positive and outspoken. And I have, in turn, taken every opportunity to raise awareness about arthritis affecting people of all ages, races and walks of life.
Most if not all of us know someone with arthritis. It’s a debilitating group of diseases (numbering over 250 kinds!), affecting approximately 70,000,000 Americans, that prevents people from living an active life. With more awareness, research funding and a bit of luck, we will all be better off despite this disease.
The internet is chock full of resources for people with arthritis, but be careful about who you trust and what you hear out there. Nothing is a substitute for your own physician and his or her advice. However, knowing more means a better conversation, so that feeling of “hopeless” and/or “lost” can be replaced by “empowered” and “comfortable”.
Great starting places for more information:
1. CreakyJoints is an organization started by a friend of mine when he was 18, Seth Ginsberg, who also has Spondyloarthropathy. This free online community provides useful information, tips for living, clinical trial updates, message boards as well as fun sections like an advice columnist. An e-mail newsletter goes out every other week with fun and useful information and updates. All forms of arthritis are discussed.
2. Arthritis Foundation is an arthritis advocacy group with local chapters that organize fundraisers like walkathons and golf outings. They’re also a good resource for local physician referrals.
3. AARDA is the only national organization dedicated to eradicating, educating and supporting people with autoimmune diseases (a major cause of some forms of arthritis).
4. Spondylitis Association is the first – and largest – organization dedicated to supporting people suffering from anklyosing spondylitis and related diseases.
5. National Institute of Health is a Federal resource for clinical information, updates and clinical trial information.
6. Arthritis Research Center is an example of an academic institution with good resources for arthritis research and education. If you live near a major medical institution, contact the community education department to determine where and when arthritis research and education groups meet.