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.
June 8th, 2010 at 7:30 am
Great. It’s the same here in New York. Can be extremely frustrating, but that’s how it is in this day and age.
June 4th, 2009 at 2:56 am
I too have Spondyloarthropathy and was totally surprised when I heard the word on my TV! I hope Ally has found a treatment that works well for her.
Most of my life I wrestled with a number of seemingly unrelated symptoms until a simultaneous flare up of my neck, shoulder, wrists, ankles, lower back, knees and hips developed in my early 30’s and I was finally diagnosed. Thanks to a good cocktail of medication - a combo of Naproxen and Sulfasalazine - I have been stable for 5 years now with only the occasional flare up. Of course, my physical activity has been greatly reduced (I used to dance) but otherwise my pain is kept to a minimum and I can do most things. Swimming is a god send.
I thank you for bringing attention to this disease.
I wish Ally the best with finding a treatment that works for her and the same for any others struggling with Spondyloarthropathy. There is hope on the other side and life can be lived to the fullest!
Best,
Rachelle
March 8th, 2009 at 5:02 pm
Hi Jill,
I was diagnosed with Polyarticular Juvenile Rheumatoid Arthritis when I was 13. This disease is the worst. It has been a very difficult time for me. I understand completely what Ally is going through. I wish Ally and your family nothing but best wishes.
Thanks,
Savannah
February 17th, 2009 at 10:55 am
Hi Jill,
I too was diagnosed 25 yrs ago with polyarticular rheumatoid arthritis. It’s been a rough road, but I’m running half marathons and coping daily with symptoms.
I’d love to get involved, do public speaking or something to let people know that you CAN live a normal life.
Thank you,
Shona
January 6th, 2009 at 3:01 am
Hi Jill.
You’re one of my favorites on the show - you’re really funny and have a good sense of humor!
I think it’s great that you want to make awareness on arthritis! Have you and your daughter found a solution to her arthritis? I am writing to you because I’ve heard that bee stings are a very effective treatment to arthritis. Watch these videos on youtube.com (http://www.youtube.com/results?search_query=bee+sting+arthritis&search_type=&aq=f)
Looking forward to the new season of Real Housewives of NY!
Best regards,
Katrine