A World Where No One Suffers from Rheumatoid Disease

When you’re making any charitable donations, please remember the Rheumatoid Patient Foundation (RPF) is each of us helping all of us.

The RPF Vision: A world where no one suffers from Rheumatoid disease.

Finally we have an organization with the specific purpose of improving the lives of people with Rheumatoid disease. Much has been accomplished quickly over the past two years. However, there is so much work to be done on behalf of patients in many areas: identifying causes of Rheumatoid disease, facilitating earlier diagnosis, more effective treatments, treatments for the millions of non-responders, comprehensive clinical care, disability accommodations, and more. The RPF is dedicated to research, education, and advocacy related to all of these.

Walter Washingon Convention Center stairs

Sometimes it seems like we’re looking up at a path that to those us who live with the disease, would be insurmountable – like these stairs. And it’s true that the needs for patients with Rheumatoid disease are great because it is a vicious systemic disease that affects millions of people. Yet its processes are not adequately comprehended by science. And its effects are little recognized by society.

Devastating data

The lifetime risk of being diagnosed with Rheumatoid disease is 3.6% for women and 1.7% for men, according to Mayo Clinic. In the U.S., research is funded at an alarmingly low rate in comparison to similar diseases like Lupus or Multiple Sclerosis. One dollar is spent per Rheumatoid patient for every 12 dollars spent on comparable diseases. The mortality rate has not improved in decades because there has been little progress in comprehensive care for the multifaceted effects of the disease. Most articles published about the disease contain disturbing errors. Large studies show the rate of remission for Rheumatoid disease is only about six percent.

How can you make a difference right now? Do as much as you can!

Rheumatoid Patient Foundation volunteers on escalator

In reality, we do not face this battle alone!

We are not alone; we have built an incredible compassionate and informed community. We face these battles shoulder to shoulder with others who understand. There are many good people who are committed to our goals.
 

 

 
RPF volunteers on escalatorAnd we’re taking the escalator! Look how far we’ve come already!

A step back provides perspective. We are no longer standing at the bottom of those stairs. If we’ve accomplished this much in less than two years, imagine what the next years will bring.

 

 

 

 

Rheumatoid Patient Foundation Volunteers at ACR
Some of the most beautiful smiles in the world.

Suggested reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

7 thoughts on “A World Where No One Suffers from Rheumatoid Disease

  • December 30, 2012 at 12:59 pm
    Permalink

    I have had JRA for 47 years and because of the
    Deformities this disease has caused, all the doctors only give me pain medicines
    When I do pass away is there anyway I can donate my body to research for Arthritis?
    It would make me so happy to help the researchers find a cure or anything helpful to ease pain from this horrible disease.

    Reply
    • December 30, 2012 at 1:00 pm
      Permalink

      We have been asked this question at RPF before and our response to this is part of a larger program we are working on. If you like Jane, I can keep your email on a list for when we have more information for you.

      Reply
  • December 30, 2012 at 1:15 pm
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    i think we need some very vocal celebrities to take this on – they need to come out of the closet so to speak on this illness – Aida Turturro (Sopranos) and Kathleen Turner are 2 that are still alive and known to be suffering from RA. They can garner public sympathy that translates into money!

    Reply
  • December 30, 2012 at 3:39 pm
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    I just signed-up for individual membership with the Rheumatoid Patient Foundation and wanted to do so before the end of the year. I finally have some income so can afford the $25.00. My challenge is for at least 10 people who read this to sign-up before January 1, 2013. Please post when you’ve signed-up. Membership is $25.00 and can be paid online. I imagine Kelly doesn’t mind if I promote the organization : ) http://rheum4us.org/become-a-member/individual-membership/

    Reply
  • December 30, 2012 at 4:28 pm
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    I was diagnosed with RA this year 2012. I am a 73 year old woman. Most people do not have a clue about the seriousness
    of RA. I was one of those people. Now I know.

    Reply
  • January 6, 2013 at 3:28 pm
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    I just recently came upon this website. Thank you for all of the honest, informative and caring posts. I have had RA for 6 yrs now. I was very lucky it was found early. I am on my 3rd biologic. So far so good. I am going through a complete hysterectomy next week and have been off the Actemra for 2 months. Needless to say, my body is letting me know. It is true people do not understand and I have lost several friends because they they think I am just a moaner. I keep up my full time job and take care of my family. I began water aerobics over a year ago and it has been a life saver. This is my one thing I selfishly keep doing. I have lost some weight and plenty more to go. I have learned to be my best friend and be with people who I know somewhat understand and yes I keep my complaints to the very minimum and when I am hurting, I cancel plans. When I really hurt I get down. I do my best to pick myself up and keep going. It is not easy sometimes. My rheumy is OK. But, he is one of those physicians who feel patients should not see their blood work results and just trust his judgement. We have reached a middle ground due to some discussions. I would like to say to everyone dealing with RA, take care of yourself, rest when you have to and don’t worry about those who do not understand. You know how you feel and remember this disease is not for the weak. Visit a website such as this to know you are not alone. Bless all of you! Lynn

    Reply
  • January 14, 2013 at 4:27 pm
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    Kelly, Thanks for the post. I deal with people who have rheumatoid arthritis and have to apply for SSD benefits. Seeing the trouble that these individuals go through, I think more needs to be done to improve the rate of remission of this disease.

    Ram
    Social Security Disability Help

    Reply

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    Welcome to RA Warrior!

    Welcome

    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

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