Letter from our Founder

Welcome to the online home of the Rheumatoid Patient Foundation (RPF). We’re thrilled that you found us!  Whether you are living with Rheumatoid Disease or provide care for someone who is, my heart is very close to you. Let me tell you why.

As a little girl, I remember my granddaddy mentioning his “Rheumatoid Arthritis” in an almost apologetic way. I didn’t know what it was – only that it was an illness that he did not want talk about. When I was a teenager, that Rheumatoid Disease took my grandfather the way it does many of its victims, by unexpected heart attack.

Over the next 20 years, Rheumatoid symptoms bothered my joints occasionally in what are called “flares,” but I was able to mostly ignore them. Then, in 2006, my whole world changed. An active, healthy lifestyle did nothing to prevent the genetic destiny of full-blown Rheumatoid Disease (RD).

Overnight, it stole many of my abilities. Even though I was physically fit, I suddenly could not even wash my hair. Like symmetrical dominoes, the disease affected every joint in my body. Treatments have been ineffective so far.

When I looked for solid answers about RA / RD, I could not find them. Research seemed inadequate. Literature did not accurately reflect the experience of people living with the disease.

Public opinion seemed to be entirely engineered by commercials. The verdict: RA / RD is easily managed by miraculous new treatments. Never mind that a majority of patients have marginal or no improvement.

In response to the urgent need, I built the largest website about Rheumatoid Arthritis. In the last four years, I’ve written 800 hundred article for various organizations or websites and received over 100,000 messages directly from others living with the disease. I could not ignore the need of people who had what seemed to be an invisible, ignored, and inexplicable disease.

They had no voice. No seat at the table. No patient foundation.

Welcome to the RPF and a new era for Rheumatoid Disease. We have a place. A voice. And a way to make change happen.

Click here to watch my short video about the RPF.

What is Rheumatoid?

Rheumatoid is a word that has been used for over a century to classify this inflammatory disease or variants of it. In recent years, the word “arthritis” has been added to the name of the disease because some of the most noticeable symptoms of the disease involve joints.

Increasingly, more precise medical distinctions have allowed more specific categorization of rheumatological diseases. For example, Ankylosing spondylitis was once considered a form of Rheumatoid disease, but is now classified as a separate rheumatological diagnosis.

One day, variants of Rheumatoid disease will be further differentiated. This process has already begun with the juvenile version of the disease known as JRA or Juvenile Arthritis.

More information about Rheumatoid Disease aka Rheumatoid Arthritis.

Seven short questions and answers about RA / RD.

More on the history of “rheumatism” in Oxford Journal of Rheumatology.