Celebrities and Rheumatoid Arthritis, Part 3: Being our own celebrities
Questions
Last weekend, I teased Julie and some other RA’ers, “So how do you ya’ll look in high heels on the red carpet?” My joke has haunted me since then. What can we do to be our own celebrity spokespersons? What exactly can we accomplish?
Ideas, part 1
How can regular folks like us become advocates for RA awareness? I have some ideas I can offer you now and a few others cooking on the back burner. I am sure that together with all of your creativity, we can take awareness for Rheumatoid Arthritis to the next level.
- Inform: It has been said before, but it cannot be left out. Take time to tell the truth to anyone who seems open to hearing about RA. Just be honest.
- Write: Many of you already blog or comment online. Don’t forget about that ancient form of communication, the newspaper. Submit a letter to the editor or a short article about RA. It may be your own writing or something that you have found. This could also work for magazines, if it’s flashy enough.
- Show and Tell: I have seen several YouTube videos about RA and JRA. Make your own video. Be factual and calm or be funny and sarcastic. Show some scars or deformities along with your smile and tell your story.
- Media Submit a video (yours or one from YouTube) to a local TV station, asking them to consider doing a news feature on RA. It could be a feature on you or another RA’er or on Rheumatoid Arthritis in general. If you love your rheumatologist, you could even suggest they do a piece on him/her.
- Trade: If you have a blog, arrange to trade posts for a day with a blogger / friend in another niche. You can tell a whole new audience about RA. This will work if you are careful to just “share” and be a little inspiring.
- Wear the message: I have some T-shirts that will be on this site soon. But you can buy them elsewhere on the web. You can buy awareness gear from the RA Warrior store on Zazzle.
Ideas, part 2?
I know who our celebrities are. They are you. I now turn it over to you for Part 2. Tell us your new ideas and what you are already doing for RA awareness.
Postblog:
Be encouraged
This year has been the beginning of a new stage in Rheumatoid Arthritis Awareness. There has been a flurry of activity. Dozens of new Rheumatoid Arthritis blogs went live (yours truly included). Sara Nash was interviewed on WebMD’s RAtv recently. Tiffany Westrich / Buckle Me Up Movement began their video series on real life with RA.
The Photo
My feet were the first to blow up with full-blown Rheumatoid Arthritis. So, pretty shoes are a rarity. Short version of this story: my daughter found these Liz Claiborne shoes recently at Marshall’s for only ten dollars. I have trained her to be a clearance shopper. Although there is no red carpet, I thought it suited this story since one of the very first divas in our movement, Sara Nash, uses her red shoes as her avatar. So, I posed for this pic as also a tip of the hat to her.
Related posts:
- Part 1 in this series: Celebrities & RA, pt 1
- Part 2 in this series: Celebrities & RA, pt 2
- Why every voice counts: The Invisible World of Rheumatoid Arthritis Speaks
From one diva to another, cheers!
Your feet look terrific in those shoes! Wear as many as you can, when you can! I can’t, but I support those who do! I love your supportive articles and outreach efforts. Keep up the great work.
😀 Hill,
I cannot walk in these shoes. I think I may where them to church once where I can sit and think it looks nice. I have a closet full of shoes I can no longer wear, but that story is for another day. Thanks for the encouragement.
my bff and RA patient and her fabulous video. she is being a celebrity
I’m sure you have found them, but here are a few celebrities who have RA (compliments of Google Answers):
> Kathleen Turner
> Matt Iseman (host of Scream Play)
> Aida Turturro (played Tony Soprano’s conniving sister, Janice, on the HBO series “The Sopranos” , AND has suffered from rheumatoid arthritis since she was a child)
> Bob Mortimer (Actor, composer, writer, producer)
> Dave Prowse (Darth Vader of Star Wars)
> Tina Wesson (“Survivor II” winner)
Of course, we all know James Coburn had severe RA, but died of a heart attack in 2002.
> Lola Garth, daughter of Jennie Garth
> Deborah Norville lost her mother to RA when Deborah was only 20. She is avid in her fight against RA.
Thanks for this article. Just the other day i was wondering how come you dont see any celebrities being an advocate for RA. You see all of these celebrities on tv talking about breast CA or ulcerative colitis and I feel like dang does everyone feel that this disease is chop liver.
Marcella,
You are so right. I hear this all the time: “chopped liver” is a great way to put it. We are going to change that, I hope. :chic:
I think because it 1s called “arthritis” it`s not perceived to be serious.Needs a more descriptive name.
Good point, Frances.
What we need is a reality show. If they can do one on little people and hoarders they can do one on us….maybe follow the lives of 3 RAers, a full blown severe case, a juvenile case, along with an early diagnoses that’s not responding to treatment.
There should be enough pain & misery to bring in the ratings. Who do we talk to? Any ideas?
That is a bright idea. I’d be a little concerned that we’d come off as weirdos since that is already the template that some have, but it could work.
Thank you. First & Foremost. You help make me feel like I’mnot alone. I’ve seen many sites that say they are “support” for those with RA or other Rheumatic Diseases but many boards are empty or the people not that supportive. I found you on FB first, and the first day I almost cried tears of joy. Someone understood. Truely, understood. I have had MCTD since I was 9 and was 1 of 12 kids in canada and one of 50 in north america with it. I’ve tried ever since not only to fight it, but to raise awareness. With the start of the world wide web, I’ve been able to raise my voice louder, and am thankful to have found more people who truely understand. I have my own site as well where I’m trying to help raise awareness and I try to often on my FB as well. I too would like to see more research done, less myths surrounding it, and more understanding. I would love nothing more than to one day have a celebrity spokesperson or see a gala event hosted to raise funds like aids, cancer or diabetes does. If you ever need aid of any kind, please dont hesitate to ask. And thank you so much again, for starting this site as well as your FB site. Warm Gentle Hugs!
Nice to meet you Jennifer. :hugright: I’ve met a few other people with MCTD, but I had no idea that dx was so rare. Yes, the internet has been a great blessing to those of us who became sick & needed information & a connection. Together, our “raised voices” may be something very difficult to ignore. :yes:
The only reason I would suggest having a celeb is they have the access to things we common folk do not. How about Aida Turturro from “The Sopranos”? She has RA. I have read some of her stuff and it doesn’t sound like she is wacky.
Thanks, Maria. I’ll try to check that out.
I was just diagnosed on Monday (February 25th) and I am so glad I found this site! This has made a lot of information much easier to understand!! Thank you! I feel like I’m crazy because I don’t think people understand – heck, I don’t even understand!
Anyway, Thank you again!!
So glad you found us althoughof course i’m sorry you needed to. I hope you get answers and a response to treatment quickly.