A Patient Foundation for Rheumatoid Arthritis
Almost every day I talk with RA patients via email, telephone, blog comments, or Twitter and Facebook.
Almost every day, another RA patient tells me that their doctor, nurse, spouse, or employer does not understand or believe them about some aspect of their RA.
Almost every day, I am frustrated because I can’t do more to help.
Over the last two years, I’ve had contact with tens of thousands of people with Rheumatoid Arthritis. We have many differences, but some things are almost unanimous.
- Most people with RA hate the public perception and the name of the disease.
- Most people with RA are extremely resilient in the face of great pain and disability.
- Most people with RA encounter problems with a medical system that misunderstands the disease.
Some clear reasons a Rheumatoid Patient Foundation is needed
Getting an RA diagnosis is often a long and difficult process. However, this is just the beginning of the need that people with RA have to be believed and understood. Why? Because most people with RA will need two things for the rest of their lives: 1) Medical treatment of complex issues related to the disease; 2) Accommodations and assistance in personal or professional situations.
The symptoms that most people with RA describe are not the same as those reflected in the literature. The literature is full of contradictions. Where there is conflict, I chose to believe the patients because I have the advantage of being an RA patient myself. I knew there must be a benefit to this nightmare.
Did you ever wonder what the reason was for the nickname I gave my former rheumatologist, Dr. Smart Rheum? I had been so grateful that I’d found a rheumatologist who was more interested in treating my RA than talking me out of it. Dr. Smart Rheum never once said:
- Well, your hands don’t look like you have RA to me.
- Well, your blood tests look good so you must be in remission.
- Well, you can’t even get RA in that joint.
- Well, RA is not supposed to hurt that much, so maybe you have fibromyalgia or depression.
…or other versions of these statements that I hear every day from patients. And that I heard from three rheumatologists while I was looking for a good doctor early in 2009.
In a typical case this week, I talked with a lady whose rheumatologist tried to make her realize that her RA could not be as bad as she says since her labs currently look okay. The doctor encouraged the lady’s husband to stop coddling her although the lady has had RA for over 30 years and holds down a full-time job. When the lady did not back down, the doctor asserted that she must see a psychiatrist since the so-called RA pain must be akin to phantom limb pain. Do you see why I wish I could do more to help?
Of the dozens of illustrations I could use, here’s an important one.
Browsing a Johns Hopkins RA page yesterday, I found this: “The spine except the atlanto-axial articulation in late disease is never affected.” In case you don’t have RA yourself or you believe that horse-hockey, please read about the preventable death of Celia Veno or see the Tag List for Rheumatoid Arthritis Spine on this website. Celia’s daughter author Carla Jones said today, “It’s SO much more common than the public knows.” RA in the spine is not rare and studies show it affects the cervical spine in about 85% of patients within the first two years. Don’t forget to read the comments on those posts to see what RA patients say and what their doctors tell them.
Note: it would be a fun exercise to see what other errors we could find on that page. And Johns Hopkins is one of the best.
Together we will be able to help each other more.
Do you remember the recent post about the Social Security Disability Compassionate Allowances List? Patients and patient organizations were present to represent the other diseases being considered. There was an MS patient, a Lupus patient, and a Scleroderma patient. But there was no RA patient present. And no RA patient foundation.
Because an RA patient foundation did not exist.
Well, it does now.
The non-profit 501(c)(3) Rheumatoid Patient Foundation now exists to improve the lives of people living with RA.
Here are just a few of the things I know that we can accomplish together. My personal list is pretty long. What would be on the top of your list?
- Create Rheumatoid Arthritis awareness for the public
- Provide newly diagnosed RA patients with information
- Help RA patients find the support they need
- Raise money for cure research
- Represent the patient viewpoint at hearings like the one mentioned above
- Help medical students to consider rheumatology
- Contribute to an accurate understanding of RA in medical schools, videos, & textbooks
- Provide scientists in academia and industry a better understanding of RA
The t-shirt store is having a sale this week! Here are the details they sent to us:
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Recommended reading
- Relevant post on Mark’s blog
- Death by Rheumatoid Arthritis: Possible and Preventable
- Video: Good Rheumatoid Arthritis Doctors Treat Patients
- My Doctor Fired Me
- Adding RA to the SSD Compassion Allowances List?
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Don’t know anything about the placental lining treatment. Might be kind of like the following though so look for trials like this too:
Clin Rheumatol. 2011 Aug 12. [Epub ahead of print]
Allogeneic mesenchymal stem cells transplantation in patients with refractory RA.
Liang J, Li X, Zhang H, Wang D, Feng X, Wang H, Hua B, Liu B, Sun L.
Source
Drum Tower Clinical Medical College of Nanjing Medical University, Nanjing, Jiangsu Province, 210029, People’s Republic of China.
Abstract
This study aimed to determine the safety and efficacy of allogeneic mesenchymal stem cells transplantation (MSCT) in refractory rheumatoid arthritis (RA). Four patients with persistently active RA underwent MSCT. The outcome was evaluated by changes in the visual analog scale (VAS 100 mm) pain score, C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR), and 28-joint disease activity score (DAS-28). Three of four patients received a reduction in ESR, DAS-28, and pain VAS score at 1 and 6 months after transplantation. Two of the three had a European League Against Rheumatism (EULAR) moderate response at 6 months but experienced a relapse at 7 and 23 months, respectively. Two patients had no EULAR response to MSCT. No one had achieved the DAS-28-defined remission in the follow-up period. No serious adverse events were reported. Allogeneic MSCT is a safe treatment in severe and resistant RA, but the effectiveness needs to be clarified.
PMID: 21837432 [PubMed – as supplied by publisher]
How do I join this…or be kept informed?
The website will be ready soon!
Kelly,
Please know that you can count on all of us for support with this Patient Foundation for RA. With your leadership and initiative and support, you have already given so many people so much hope for the future. When the time comes, we will be proud to back you with any needed assistance—just name the tasks and the steps to take, and we’ll help you continue the trek toward recognition and help for this dreadful disease!
Kelly, Because of your website I was prepared for my RA doctor’s appointment. He said things that I knew weren’t true — that the lack of visible swelling in my hands meant maybe it wasn’t RA, that breathing issues and back and neck issues weren’t related to RA. Oh, it turned out okay but I sure wish doctors would read the RAWarrior.com site!
Reading this Kelly gives me so much hope. The part about involvement of the spine especially. And, what your Dr. Smart Rheum never said, wow! Thank you for all you do!!!
I think this foundation is great and am so thankful you are working so hard to create awareness!
My mother in law is a pillar of strength!! She stands 5 feet tall and in my eyes she stands closer to10 feet. I say all this because she is beginning to crumble. The RA is taking over her hands,ankles and more. I suffer for her as we try to find the appropriate medications for her. The appropriate meds are economically out of reach. One medication is $1000 out of pocket each month. How does the average person come up with this kind of money? She falls between middle America and those that just scrape by. So,because she doesn’t make $100,00 a year she suffers in silence. How is this right? This woman has worked so hard (there is so much more to this story) for her family and now day by day is slowly degenerating. How can we help her when we are barely surviving ourselves? Can anyone guide us? Is there any form of help available someone that falls dead center of no help? Watching her suffer is horrible and I believe unnecessary. Can someone please help me to help her? I know that we aren’t the only ones in this predicament.
I just recently found rawarrior.com. I am so glad to finally see others with thoughts like I have had on RA. I was diagnosed, for sure, with RA in 2005. My feet had been killing me, unable to walk to bathroom at night especially. I went to doctors who even told me I was lucky I did not have a disease called RA! I was told to take Naproxen even though I had high blood pressure. To lose weight and wear the temporary inserts for shoes a podiatrist made for me. Told to save my money, as I had very poor health insurance, and buy real inserts. Then I would be better! I did all that and saved for a year to have the extra $300. By the time I got those my feet of course were worse and I couldn’t use the $300 inserts. That doctor acted insulted and said “I usually am liked by my patients.” Also by then my right arm had become so painful and swollen at my elbow I couldn’t even bend it brush teeth or floss. Doctors put me in slings and didn’t diagnose me correctly. I demanded to be sent to an RA doctor after reading a lot online of diagnosing myself. That RA doctor ran MRIs and diagnosed me as having RA. He started giving me cortisone shots everywhere. It was so awful! He also started me on hydroxochloriquine. Helped a little but not enough. I went to different insurance, different doctor, different town. That gal gave a couple more cortisone shots in wrists and shoulder and recommended to start Methotrexate along with a pneumonia shot. Scared me to death! When I read too much info online about RA & Methotrexate I became so depressed. My mother died in 06 from Acute Lukemia and had massive treatments of chemo. I instantly felt Methotrexate would cause my death like her. I still have great fears of all the meds. Eventually I had to start self injections of Methotrexate as couldn’t stand pills. I still take hydroxochlorquine. I take Ibuprofen all day. I have had to take Predisone off and on. But haven’t for a very long time had cortisone shots. I get so fearful it is hard to explain to people. My RA doctor I mentioned above had to retire, so I tried a new RA doctor in Seattle. She is very kind and listens to me and my fears. I have to laugh as she did type a lot in her laptop on my first couple of visits, but it didn’t scare me as she still looked up and paid attention to me. She ordered hand and feet exrays and was surprised I’d never had any. When I returned over the exrays and things were explained, it was very nice. She offered other ways she could see of treating it, but of course more expense and no guarantee either. She showed on the exrays how what I was doing was working. She explained side effects of other meds and warned me none of them sound good when you read all the side effects. I told her I pray that I will wake up one day and it will be gone or in remission. She smiles nicely and says “Yes I hope so too.” This doctor’s name is Dr. Jennifer Gorman and she is at the Polyclinic in Seattle. On days when I am down, especially after injecting myself, I of course think of all this doctors faults and wish I could find a magic doctor who could give me a medication that wouldn’t make me sick or fearful of dying of cancer. But after reading other posts, I feel I am lucky. I have even told her the same and she listens nicely. I hope I have helped someone and I am so glad to have found this site and read other RA posts.
Hi my names Amanda Cortez I am a cancer patient. My mom has RA always in pain please I’m looking to find help for her I really need her I hate seeing her in pain please I feel like I can’t do anything for her but I am trying. Her name is Judy Cortez #(509)929-4880 or e-mail chubbscortez@yahoo.com thank you