I could not agree more, Leslie. I can't even find an arthritis walk anywhere near where I live. Since I can't do a road trip because of the pain, I cannot participate. Of course, right now I couldn't physcially do the walk. I would like to participate some time in the future, though.
This may be a futile exercise, but I was thinking about writing a letter to some political types. I know many of them would just be interested because of the PR aspect, but I keep wondering if I might find one who actually cares about the welfare of his/her constiuents. I think we need to get some of our politicians involved, and perhaps some of the pharmaceutical companies.
Our message is definitely being drowned out by Relay for Life and the Breast Cancer awareness campaigns. Please don't get me wrong. Those are great causes. I just think they are overwhelming. I was also thinking of researching the celebs who have RA. There surly are some celbrities who have RA out there...??? Maybe they could do some TV spots or do some PR for the Arthritis Walk.
I just have a lot of ideas floating through my mind at the moment. Not sure what to do, but I would like to do something. It just doesn't seem that the Arthritis Foundation has a very active awareness campaign.
Peace,
V
V, thanks for your comment. I think you point out a really important issue. In my opinion, most of the people that you see at these walks are either fairly high functioning or wheelchair bound. You don't see the in between. And I think that there are a whole group of people, who, like you, want to take part in some kind of awareness campaign, but can't do the walking for whatever reason. I think that you have some great ideas about how to increase awareness, and I would be interested to hear if you follow through with them.
I think I will start composing my letter and send it off to some legislators and a different letter to the American Arthritis Foundation. Seems like a good place to start. I will let you know if/when I get a response. We really do need to do something to raise awareness. Thanks again for your great article. I enjoyed reading it, and you brought up some important issues.
Hi Leslie,
In addition to my rheumatoid arthritis I also HAD rectal cancer twice. I was involved in the first Undy 5000 walk in Atlanta, GA sponsored by the Colon Cancer Awareness group in 2010. We raised over $50,000 but as you mentioned, these diseases are not "sexy" and it is difficult to create excitement for them. The interesting thing is that more people are affected by arthritis than cancer. I truly believe if researchers could understand immune system issues more fully, there would be less cancer, etc. I get lots of sympathy for having had cancer. Few people understand RA well enough to know how tough it is.
Cancer can kill you but RA sure makes your life tough!
Keep on Walking...I plan to participate in an arthritis walk next year if I can!
I participated in the lupus walk this past weekend and it was a complete disaster. It was completely disorganized and it seems anti-thetical to me that people with photosensitivity are made to stand out in the sun for hours.
Anyway, I guess in some ways it's comforting to hear that my illnesses aren't the only ones getting the short shrift. But it is a very frustrating situation. I guess all we can do is participate, voice our opinions, and hope that things improve in the future (in more ways than one).
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what is a terrific post, Leslie! First, I want to thank you for getting out there and doing the walks, even though it is at times difficult. Second, I also want to thank you for your constructive criticism - not that I'm involved with arranging these walks, but I think it's important that such critiques are heard. Because you're right - the various forms of arthritis have a really crappy profile and until we become "sexier" and tap into the kinds of strategies and momentum that breast cancer has managed to build, we are going to be fighting an uphill battle for awareness and funding.
Lene, thanks so much for your comment. I was a bit worried about how this post might be received, but I wanted to share my experiences and honest opinion about these walks. I think you're spot on that we, in the arthritis awareness community, need to "sex things up" in order to build momentum for our cause.
Thanks Ladies for being so pointed about funding RA and such autoimmune diseases. I can't tell you how very many people think RA is the same as any other kind of arthritis and home remedies is all I need to adhere to. By now, I just listen and nod, murmur when needed and ignore them@! I don't so much think getting a 'sexier' atmosphere would work as much as if someone popular movie star came up with this, like Michael J Fox did with Parkensons. The world now sits up and pays attention to that disease, as they should about autoimmune issues. I wouldn't wish RA on anyone, but this would help the world notice we're not just whining in our milk!!!
did you read my interview with Christine Schwab? She wrote a really interesting book and is using her experience with RA and her position as a successful fashion is reported to bring awareness to the funding issue and trying to reduce the stigma and misunderstandings of RA. Lots of food for thought.