This is a fantastic interview; it really highlights what Kelly has been able to accomplish and expresses well the view of a lot of RA patients. I think my favorite part is the idea that starting the RPF would be too hard to do...but "we'd do it anyway!" I feel like this is a common theme among the RA Warriors I know -- pushing hard to just live life and finding a way to get through even the "impossible" situations. I'm very excited for the future of the RPF, because I know that when we band together we can make a difference!
Lene,
Your interview with Kelly was great. I happened to get on the Warrior website by accident one day and was really impressed by all that Kelly has done and plans to do. I also really enjoy her writing style. Thanks for giving us an "up close, personal view" of this neat lady. I appreciate her work even more now knowing what she has experienced.
Thanks again for all of your hard work in keeping all of us informed.
Wonderful interview, ladies! I have been honored to know Kelly not only as a fellow blogger, researcher, and writer, but as a friend. It was nice to finally get to meet her this past September. We'd had phone conversations before (regarding the planning stages of the Rheumatoid Patient Foundation), but to meet in person a fellow RA patient/warrior is even better. Kelly has a vision and the RA community continues to become stronger because of it. Way to go, Kelly!!
Thanks, Lene,
Lisa
Excellent interview, Lene. Kelly Young and her RA Warrior have certainly been an inspiration to me, as have you and your writings. We can surely hope that during 2012 great strides will be made in the treatment of and education about RA/RAD. I'd surely like to see the name change in order to promote greater understanding of this debilitating disease!
Thanks, Norma! I've been on the fence about the name change - I've lived with RA for so long, what I call it has had little impact on my life. However, the more i talk to other people and the more misconceptions I run across, the more determined I am that this is the way to go. It will help create understanding and should also bring about a more holistic approach to treatment.
Hi Lene,
Thank you for this wonderful interview!!
I had heard that people wanted to take arthritis out of the name, but never really considered why. Kelly makes a compelling and convincing argument. Consider me on her bandwagon!
Ish
I hope it's okay if I reply, too. It has been a journey for me and some days in some ways, I don't care if the disease is called peanut butter because it won't make my symptoms improve! But, seriously, I wrote last week for the first time that I am backing the name change here.
Recently, I've been reading about the process of changing names of other diseases, especially some rheumatologic ones. It's fascinating and encouraging and I'll try to blog about it soon.
Many facts support the need for the change, but one in particular stands out: Rheumatoid is not a type of "arthritis;" arthritis is a symptom of Rheumatoid disease. Referring to the disease as a "type of arthritis" is an idea that was accepted before research showed that the disease is systemic.
Kelly 
the systemic aspect is what really won me over - it's something that is so rarely discussed or even considered. When I was 12, my JRA went systemic and almost killed me, so I know firsth and how important it is to consider more than just the joints.
My rheumatologist focuses primarily on my joints and I'm the one who brings up taking a look at my heart health, etc., with my family doctor. She has jumped right on it, though and to be fair, I don't expect my PCP as a generalist to know the intricacies of my disease. She was referred me to an ophthalmologist who told me to not come back unless I had something wrong with my eyes. She obviously knew nothing about RA, as well, yet when I was a child in Denmark (30 years ago), my rheumatologist insisted that I get checked by an ophthalmologist every six months. I believe the name change could help with such confusion.
And besides. Having something called RAD really tickles my funny bone. I've never been remotely hip, so being RAD appeals to me.
Lene...
Hands down...you do the best interviews!
Thank you for introducing us to this courageous patient advocate. I must admit one of the compelling things I am interested in is...how does she homeschool five children and battle RA? I am a homeschooler as well but I am only homeschooling one child... my yougest son. But it is hard. My son and I are both battling neurological conditions....me with my MS and he has autism and newly diagnosed epilepsy.
Anyways...I could use some pointers of how to balance family life...raising kids and dealing with a chronic illness.
Thanks for the inspiration!
MM
My jaw was on the floor, to when she told me about the homeschooling. Her two oldest are in college and her two boys in high school and taking some college courses. Primarily, she home schools her six-year-old. Still, though. I'm in awe. But then I'm in awe of all parents who homeschool.
I'll shoot Kelly an e-mail asking her to drop by when she has a chance to share pointers.
Hi MM,
I'm sorry it took me so long to get back to your comment!
Right now I have a 6 year old in homeschool and 2 teenage sons. The older ones are starting to take some classes at the community college which many families do. Mostly, I supervise, test, and give instruction on the topics I'm good at like english or algebra. They can learn so much on their own once they know how to do that and it's the best thing for them anyway. It really sets them up for success in college and life-long learning. My Roo,6, loves to learn and read as that's just the way our life works so he combines that with loving to be outside! He takes books, even his math - up on the swingset! 
His life is less ordered than his siblings' lives were, but I also hope it's what's best for him. He is certainly full of ideas and initiative which I think will be a big help in life.
My RA disease has been a problem at times because we get "behind" but not really any more than any other family I know. We also might sit on the sofa or the bed instead of a desk or table sometimes. I know a few people on Facebook who homeschool and have RA. It's just like any other job we do while being sick: we just somehow manage to get through, usually better than we thought we could.
What is your biggest concern about it? My biggest regret is lack of field trips that we did so much when the others were young. But there is plenty of time yet so maybe that gap will be filled somehow.
Just a side note: I work in nuclear power research and development and RAD in the nuclear industry stands for Radiation Absorbed Dose. It is a measurement we use of the amount of radiation absorbed in a given material.
I LOVE the change to Rheumatoid Autoimmune Disease though. I think this will help others understanding our disease better (I hope).
some of what you described actually rang the fibromyalgia bell with me. Check out the fibromyalgia section on our Chronic Pain site for more information about this condition to see if any of it sounds familiar. Seizures are usually not part of fibromyalgia, so that may be something else altogether - it's not in my area of expertise, so I unfortunately, I can't give you any particular good advice on that. I suggest that you ask your family doctor for a referral to a neurologist (for the seizures) and a referral to another rheumatologist. Sometimes when things are bit mysterious, it can take several doctors before you find someone who recognizes what's going on.
good luck! Please keep us posted on what happens?
Featuring Content From:
By using this service, you accept our Terms of Use. Please read them. The consumer health information on is for informational purposes only and is not a substitute for medical advice or treatment for any medical conditions. You should promptly seek professional medical care if you have any concern about your health, and you should always consult your physician before starting a fitness regimen. Copyright © 2013 Remedy Health Media, LLC. All Rights Reserved.
)
10 Celebrities with Rheumatoid Arthritis 
5 Tips for Exercising with Lupus 
Test Your Knowledge of Rheumatoid Arthritis 
6 Facts on Rheumatoid Arthritis, Sex and Relationships 
Thank you for highlighting so clearly the needs of people with RA / RAD and the ways that the Rheumatoid Patient Foundation is working to address them.
It was an honor to be interviewed by you as a friend. And as a fan of Health Central, a fellow patient and writer, your professionalism is very appreciated! This has to be my favorite interview ever!
Kelly
ditto! it was a pleasure!
I love the way all the different RA/RAD communities are connecting - I think 2012 is going to be a major year in terms of getting out our message. Looking forward to being on the barricades with you!