A Patient Foundation for Rheumatoid Arthritis

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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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Discount: $10 off subtotal of $50+

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Discount: $35 off subtotal of $100+

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Kelly Young. All rights reserved.

This entry was posted on Friday, April 22nd, 2011 at 6:00 am and is filed under Don't miss this!, Special Occasion. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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