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by KatieB

Rheumatoid Arthritis: Finding the Strength Within

August 14, 2013 in Encouragement

By Rebecca Bader, PhD

Rebecca Bader has a PhD in Materials Science and a big heart for those who suffer from Rheumatoid Disease. She is a professor at Syracuse University, where she has a lab dedicated to Rheumatoid Disease. She serves on the Rheumatoid Patient Foundation Advisory Board.

Becky Aunt Susan

As a scientist and competitive athlete, I have been told by many that I am a strong woman. I understand this perception, but I think the strongest people often go unnoticed, their voices unheard in the daily shuffle of life. My Aunt Susan has risen to the top of my list in terms of these strong people. On her behalf I would like to scream and shout until people stop their shuffle, look up, listen, and begin to understand the strength required to combat rheumatoid arthritis.

At 18, my aunt presented with “fever of unknown origin.” At the time (and time has not changed very much), the doctors knew little beyond that and struggled to make a definitive diagnosis. A year later, she was diagnosed with rheumatoid arthritis and began what has become a 40 year battle to prevent the disease from consuming her life. The surgeries began when she was in her 20s with wrist fusions and finger surgery and have culminated with toe removal, ankle fusion, and replacement of all major joints.  Those joint replacements are now failing.  There is no option of revision for my aunt who has little bone left for attachment and whose body has rebelled against her so badly that a small cut takes over a year to heal. Despite all of this, she still holds onto her independence, owning a small house in Rochester, NY and caring for her dog, Jake. That is a truly strong woman.

Becky Aunt Susan xrayWhen I became a faculty member at Syracuse University, I believed that I could use my position in academia as a platform to educate the academic community and the general population on the reality of rheumatoid arthritis.  Although I have succeeded to some extent, this has been far more of an uphill battle than I anticipated. I have seen how rheumatoid arthritis can completely alter the course of one’s life.  Yes, my aunt is independent, but on occasion the disease gets the best of her, and she mourns for the life that she wanted to have, where she could travel the world and meet people from all walks of life.  Instead, her furthest trips are typically with my mother to Wegmans grocery store; and even those short trips are fraught with stress because she has to constantly worry about being bumped by a cart or another person.

This is not something my colleagues are accustomed to thinking about. I had one colleague debate with me whether osteoarthritis or rheumatoid arthritis is worse.  Frankly, this topic is not debatable; rheumatoid arthritis wins the worst disease contest hands down.  Two other colleagues and numerous administrators have requested that I lump rheumatoid arthritis together with osteoarthritis in order to increase my chances of obtaining research funding.  I have refused, and I likely have burned some bridges by doing so. However, inspired by the strength of my aunt, I stand my ground. How will people ever learn the devastation that the disease can cause if rheumatoid “arthritis” is classified with osteoarthritis?

As I enter my 6th year in academia, I am proud to say that I have taken my aunts “pictures” (the actual picture of her with her dog Jake and the composite x-ray image illustrating all of her surgeries) to academic institutions across the country. I have not convinced everyone that rheumatoid arthritis is a disease that warrants more significant attention, but several highly educated individuals have contacted me and asked to collaborate simply because they now understand. These are the moments when I am most grateful to my aunt for inspiring me to stay the course and work hard to give a voice to these strong individuals with rheumatoid arthritis who often go unnoticed.

by KatieB

New Coordinator for Dedicated RPF Volunteers

April 25, 2013 in Events

Over its first couple of years, RPF has been blessed with talented and enthusiastic volunteers. All of the activities detailed in our recent annual report were accomplished on a volunteer basis. If you’ve read the new white paper, you’ve seen the work of several different volunteers who contributed at every stage of the process, from answering survey questions to compiling the data to donating photos to final review by some of our advisors.

Press releases and newsletter articles, poster and brochure design, fundraisers, the new Rheumatoid disease ribbon, and the RPF store… are just a few of the ways volunteers have contributed in recent months. As a national organization, RPF has rapidly reached a point at which it requires the efforts of a Volunteer Coordinator.

And now, I have the pleasure of introducing to you our new Volunteer Coordinator, Shannon Young.

ShannonShannon is passionate about helping people find the things they can do to make a positive impact. She shares RPF core values, and is committed to seeing our mission carried out. Shannon knows “it will take many hands to accomplish” our goals, and she looks forward to helping equip and support them. She told me recently: “I believe that for an organization to thrive and reach its goals, it must be a learning organization where staff and volunteers at all levels, individually and collectively, are continually increasing their ability to produce results they really care about.”

Please join me in welcoming Shannon.

Click here to complete a volunteer interest form. Shannon will be contacting all volunteers soon. Please be patient – she’s a volunteer too.

Note: RPF has other volunteers and staff who share the names “Shannon” or “Young;” however Shannon Young is not related to any of them.

2013 RPF Annual Meeting

March 12, 2013 in RPF News

RPF-board

By Dana Symons

A few weeks ago, the RPF Board of Directors gathered for an annual meeting to discuss direction and strategy for the year ahead.  It was a wonderful opportunity for us to meet for three days in person, as we do not all live in the same region, and it provided some time to focus on our plans for 2013.  With the first Rheumatoid Awareness Day established at the beginning of February, we are already off to an exciting year!

At the meeting, we outlined short-term goals that will help the RPF to work toward our four primary goals as an organization:

  • To create greater public awareness of the nature of rheumatoid disease.
  • To develop resources to support patients in effective healthcare decisions and in advocating for themselves and others.
  • To advocate for quality healthcare, appropriate disability accommodations, applicability of scientific research, accurate media coverage, and fair governmental policies.
  • To contribute to and promote scientific discovery that leads to a cure.

Some of the things we have in the pipeline for the coming year include new educational tools and resources, advocacy events, research partnership opportunities, and awareness events/exhibits.  We also look forward to equipping our volunteer base to take a greater role in promoting patient advocacy, raising awareness of rheumatoid disease, and fundraising.

The weekend went by far too quickly, but I left feeling blessed to be serving on this board alongside such a wonderful group of people and energized for all that we have planned for 2013!

by KatieB

A Glass Half-full of Moonlight

September 13, 2012 in Encouragement

By Kelly Young

Dancing in the Moonlight

Moonlight
Dancing in the Dark wouldn’t sound very magical. Who would dance very long to a song called Dancing in the Shadows either, even if moonlit nights are full of shadows?

It’s the classic glass half-full argument. Even if you tell it to me straight, you can still choose whether or not to smile and say it nicely.

Of course people with RA get tired of seeing a serious disease minimized in the media who usually insists

  • That the disease is nothing more than a few aches and pains.
  • That the medications are practically a cure.
  • That patients mostly live beautiful pain-free lives.

Our providing a more accurate picture of the disease will greatly benefit patient care, research funding, and accommodations for physical disabilities. This is one of the critical goals we’re accomplishing together through the Rheumatoid Patient Foundation (RPF).

But as we take huge steps forward into the public spotlight, we’re still going to smile!

At times I’m sure most RA patients have felt “mad as hell and not gonna take it anymore.” We know the reality is most people with RA

  • Bravely overcome obstacles daily.
  • Suffer more than others realize.
  • Fight a progressive systemic disease.

Our challenge is to portray the reality without spin – pulling no punches – standing firm as we light one more candle in the darkness – I mean, moonlight.