Tuesday, March 24, 2009

Cinderella II - let's do something good

Yesterday I threw some data out there showing that there is a huge inequity in the amount of research done on RA versus PsA, and I promised to offer some suggestions today on what we can do about it.

I'm not a shill for the National Psoriasis Foundation, really... I promise. But if you're looking for the best bang for your buck in advocating for more research, go to their website and DO something. Write a letter to your congressperson, walk (or hobble, for some of us), make a donation or give some blood.

But, in addition, talk, talk, talk about Psoriatic Arthritis. We should certainly be talking about our disease to our health care advisers (doctors, pharmacists, physical therapists), but really, talk to everyone. You never know who is listening. That mom at school may be a drug rep for a big pharma, that guy at your book group might have a cousin in research. I suspect that there are so many Google hits for RA because there are so many Google hits for RA! It is a vicious technological circle... because Rheumatoid Arthritis is already in the national dialogue more than Psoriatic Arthritis, when people search for "autoimmune arthritis" or "joint pain" RA comes up more often. Frequency breeds familiarity - so lets make PsA come up more frequently - in conversation and in web searches. I love those new Humira ads, btw - they are doing wonders for building familiarity.

I know we're tired, and some of us feel ugly. My scalp is a nightmare, and have I mentioned that my knees look like grapefruit? I'm no princess. It's hard to go public - I know. But the sooner we make ourselves known, the more we will be included in the national dialogue, and the more scientists will sit up and take notice.

Rant over - gotta go find my tiara.


  1. I've got mine on -- thanks for this great blog. Lizi -- Fellow PSa'er.

  2. I have my tiara on -- great blog -- thanks for getting us out there! Fellow PSa'er Lizi

  3. Thanks Liz! Lets all get pretty and LOUD!

  4. Thank you so much for this wonderful blog! My husband happened upon it while researching one day. I am a 28 year old mother of two young kids. I was diagnosed with PsA in January. We are working on building a support group in the Indianapolis area with emphasis on community education. I think the eloquent way that you have decided to deal with this disease only inspires the rest of us! :-) Erin

  5. More power to you, Erin! The more we can advocate for ourselves and our community, the better. Thanks for your kind words about my blog, too!


  6. I really enjoy reading the way you write things

    Chris from the PSA forums!!!