Monday, May 2, 2011

Foundation Frustration

I think the Arthritis Foundation does amazing work for people dealing with all types of arthritis - and their families! - and I am actively trying to get involved with their work. I am also a fan of the Arthritis Foundation on Facebook, and so I was delighted to see in my news feed this morning that May is "Arthritis Awareness Month."

However, I have to admit to being a little frustrated and disappointed when I clicked on the Arthritis Awareness Month link. The vast majority of the information provided on the site is about osteoarthritis (OA). I do recognize that the vast majority of people dealing with arthritis are likely dealing with OA, and I'm guessing that the majority of the Arthritis Foundation's budget is also focused around OA. So I am not trying to downplay the seriousness of OA or the need to address OA in any way. 

However, what bothers me is the title of the campaign. The title isn't "Osteoarthritis Awareness Month" - it's "Arthritis Awareness Month." And it seems to me that a campaign about arthritis awareness is the perfect opportunity to promote awareness that there are lots of different types of arthritis. I also think it would be important to address the fact that other types of arthritis may need to be addressed and treated differently than OA. Sadly, the campaign website is almost exclusively about OA, which is pretty much the exact same complaint I had about the Arthritis Awareness Month campaign last year.

The main campaign page says nothing about the fact that there is more than one type of arthritis. If you click on 10 Facts About Arthritis, there is a slight mention of the fact, but it is pretty brief:
3. There are over 100 forms of arthritis, including little talked about diseases like Kawasaki disease, which involves inflammation of the blood vessels, and Sweet's syndrome, which is a skin condition marked by fever and painful skin lesions.
A couple of the other "facts" mention "rheumatic conditions," "JA," and "JRA." A few of the other links have secondary menus on the left-hand side that you could follow to get to information about other types of arthritis - such as RA or JA.

But there is nothing obviously available on the main campaign page that address the important fact that people suffer from many different kinds of arthritis. To me, this seems like a pretty big failure for a campaign that is supposed to be about increasing awareness about arthritis. 

Which is really a shame, because if there is anyone living with arthritis who could sincerely benefit from increased awareness about different types of this disease, it's those of us forced to deal with arthritis at a young age. Because I can almost guarantee you that all of us have had someone (or many someones) tell us that we are too young to have arthritis. And what's the solution to that? Awareness.

3 comments:

Living AutoImmune said...

Found your link on the AF Facebook page. I've been saying the same thing about their "awareness" for years.

Melissa (A Gracious Calm) said...

That's disappointing. As someone who today is having a flare from RA, and can feel the heat radiating from many joints, it would be nice to get recognition about the disease I have from the foundation that allegedly supports it.

~Mariah~ said...

LIVING AUTOIMMUNE: It's really unfortunate to me that the one organization in the best position to address this "awareness" problem isn't doing so - especially in an "awareness" campaign!! But maybe if they get enough feedback from those of us who are disappointed about it, we might see some change. For example, last year they actually altered their marketing approach based on an email I sent them (http://fromthispoint-forward.blogspot.com/2010/05/helping-avoid-arthritis-confusion.html)

In the meantime we just have to do what we can to increase awareness ourselves - as I see you and your amazing daughter are already doing!

MELISSA: It certainly is disappointing to see, particularly in a campaign that is supposed to be about "arthritis awareness."

However, the Arthritis Foundation does have a lot of great resources for people with different types of arthritis - certainly more than any other organization out there. Unfortunately you just might have to dig a little bit more to get to them. Here are a few for RA:

http://www.arthritis.org/rheumatoid-arthritis.php

http://community.arthritis.org/community/raconnect.htm

http://community.arthritis.org/forums/Forum1831-1.aspx