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

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Recommended 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/

75 thoughts on “A Patient Foundation for Rheumatoid Arthritis

  • April 22, 2011 at 6:53 am
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    So excited to find information on the new patient foundation. How can I get involved?

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  • April 22, 2011 at 8:23 am
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    This is GREAT news! All of the things you listed are needed. I’d just love to see accurate symptoms lists on major websites. Can’t wait to help!

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  • April 22, 2011 at 9:09 am
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    This is fantastic Kelly! I am so excited! Thank you so much. So now let me ask, what can we do to help?

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  • April 22, 2011 at 9:25 am
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    Sign me up Kelly, let me know what I can do or how I can help.

    Way to go!

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  • April 22, 2011 at 10:07 am
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    What can I do to help? I can’t wait to get started! Sign me UP!!!

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  • April 22, 2011 at 10:08 am
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    I would love to help out with the foundation. Does it have a website? Please sign me up so that I can help.

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  • April 22, 2011 at 10:18 am
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    Yes Kelly, how can we get involved? This is wonderful news.

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  • April 22, 2011 at 10:38 am
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    Yes, the website will be coming and I’ll post more info as soon as possible. We’ll put up the mission statement and the board members and everything as soon as possible!! We have some great people behind us already!

    Thank you all so much for posting support!!

    Reply
  • April 22, 2011 at 10:52 am
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    I am all for it…what can I do to help get it going. I was diagnosed about three months ago and will now have to under go a medical evaluation board with the military, which means I most likely will not be able to stay and I will no longer have employment.

    Reply
  • April 22, 2011 at 10:58 am
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    Hooray for Kelly! Thanks for all you do! And Happy Easter! 🙂

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  • April 22, 2011 at 11:15 am
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    What exciting news,Kelly!! I look forward to what comes next!Wouldnt it be great, if we had enough members to take RA patients to their appointments, tests, etc, if they need assistance to do so?

    As a Christian, it would also be great if we could have united prayer, but i realize that may be just a very specialized section of the new organization.

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  • April 22, 2011 at 11:48 am
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    Ms. Kelly,

    A Patient Foundation for Rheumatoid Arthritis sounds wonderful!

    I live in southeast Louisiana. I’ve tried contacting the AF a while back (year ago) for information, questions and/or help. After leaving several messages with live agents from their 800 number and leaving a message with a lady in their main office in Atlanta , no one ever returned my calls. I was a ‘friend’ to the AF through my FB account so I posted on their wall that I could not get in touch with them. Then I had someone send me a message saying they would get someone to get in touch with me. Several weeks went by then finally someone did call. One of my questions was about a support group, where I could correspond with people going through the same health issues as myself. I was told because of Hurricane Katrina (5 years ago people) Louisiana doesn’t have an AF office. I asked if they helped with consuling and they referred me a different foundation. I asked if they ‘helped’ people obtain aids for everyday living (canes, walkers, etc.) and again was referred to another foundation.

    Is the only thing they (AF) do is raise moneys for research? I thought they did so much more than research. Because all those special drugs that are ‘suppost’ to help us cost our insurance companies so much. I said ‘cost our insurance companies so much’ because I doubt you could afford these drugs IF you didnt’ have insurance. One drug that I tried for awhile ‘that didn’t help’ cost my insurance company about 7 grand every six weeks. I’ve tried several. So far, none has really made any difference.
    I am widowed. I live alone. Most of my family and friends did move because of Katrina. For the most part, the only backup/support system I can COUNT on is a brother who lives 45 minutes away and has heart trouble himself. I get up every morning 2 hours ahead of time to fight against the pain to get myself dressed for work. I still work fulltime. I’ve applied for disability, but havent’ heard anything as of yet. I had both knees replaced 8 years ago. Currently I have trouble with both ankles, wrists and fingers. I keep hearing from others, if I’m working, I won’t qualify. And if I don’t work, I’d lose my home and be homeless. Thank God for a very understanding boss. Their are many days I sit at my desk and cry in pain.
    But I think what is more frustrating than anything is people questioning your pain. The more information feed to the public can ONLY help.
    I’ve learned more from reading YOUR site than I have from ANYWHERE. Thank you Ms. Kelly for feeding us the knowledge we need and letting us know we’re NOT alone.
    Here’s wishing you many blessings,
    Rose

    Reply
    • April 23, 2011 at 8:04 pm
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      Rose,

      I’m sorry to hear of your disappointing experience with the Arthritis Foundation. Each region has a local chapter and the services/assistance they provide may vary.

      Over the 34 years I’ve had RA, I’ve found my local chapter in Northern California to be helpful. It was at an event they held, that I heard a rheumatologist speak — he has been my doctor for nearly 25 years now. I’ve taken a Self-Management Workshop sponsored by AF and participated in an AF RA support group. I’ve also taken an arthritis pool class sponsored by the AF.

      Money raised by local chapters through events like the Arthritis Walks go toward courses and for training and certifying course instructors, and this may vary from chapter to chapter.

      Reply
  • April 22, 2011 at 12:40 pm
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    I found a compassionate & intelligent Rheumatologist and his kindness was so unexpected that I cried happy tears all the way home!

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  • April 22, 2011 at 2:50 pm
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    Awesome Kelly!! I have been patiently waiting for this, and am very excited to see it happen.
    By the way, I would not be an educated, outspoken patient today with out you and your blog. Here is just one example of what you have done for me. I would not have the knowledge or confidence to talk with my Doc like this without what I’ve learned from you:

    Last week at my rheum appt I was determined to have my Doc understand MY RA as I was really getting tired of it being confused with someone else’s. I explained my history. I pointed out that one of my dip joints was the first of my finger joints to be affected by RA. He said NO, RA does not affect the dip joints. I said well it did on me, it was red, swollen and painful for several months, then morphed my finger into a swan neck deformity. I don’t think he agreed that it was RA, but maybe it will make him think.
    Most importantly, I asked him to please ask about my shoulders, not my hands, since they are my disease barometers, along with fever. He said, I guess that can happen to have the shoulders be inflamed, without the hands being inflamed at the same time, but it is more unusual. He agreed that with the shoulders, you can’t see the swelling/effusion unless an MRI is done. I felt so much better after this appt. I am hoping he does understand my RA now, and treats me like an individual.
    I encourage you all to introduce your Doc to your RA, if it contradicts the text book!
    I have 3 joints affected by RA in my fingers, they happened one at a time and did not affect the matching joint on the other hand. My RA was unsymmetrical for the first 3 years. This is one reason I did not get diagnosed early on.
    Kelly I will surely be a part of the new organization in whatever capacity you want, even if just a member. The Lord willing, I will be able. Thank you for all your hard work and dedication, you da bomb!!

    Reply
    • April 23, 2011 at 12:08 pm
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      Thank you, Ronda! Your conversation with your doctor is worth quoting and I’ll bookmark it! Wow for you Ms Brown!

      Reply
  • April 22, 2011 at 3:02 pm
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    I am so excited and happy. As alot have said, I will wait impatiently for instructions on how to help. You continue to amaze me.

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  • April 22, 2011 at 3:37 pm
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    I am a physician with RA. I have been so let down by my profession in the last year as I have had many of the experiences that you have described as a patient. Feeling like I have to prove how awful I feel fills me with self doubt. You can’t measure pain. That’s not the worse part…daily fevers and 25 pound weight loss have left me barely functional. But im seroneg and aparantly doing just great! I used to run 10 k,I walked around for 2 yrs with 2 ruptured discs in my ls spine before finally having surgery. I am no stranger to pain. I have kept trucking through it all. The only the I want is my life back. Not pity. Not attention. Not pain meds. You are leading a trail of awareness letting patients know that its ok to stand up for their needs and rights and hopefully our rheumatologists will be reeducated as well

    Reply
    • April 23, 2011 at 12:26 pm
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      So well said, not much could be added. I’ve heard from a handful of doctors who have RA who write secretly hoping to preserve their careers – RA doesn’t care what our profession is – and unfortunately our medical care is about the same too.

      Educating rheumatologists is extremely high on my priority list. I’d love to have you on board some day as we work that out.

      Reply
  • April 22, 2011 at 4:06 pm
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    Kelly, you asked:
    “Do you see why I wish I could do more to help?”

    I see why you wish you could do more to help, and like many others here, I want you to see, no FEEL how you (and everyone who shares there story here) does help. So much more than can be measured.

    I was diagnosed back in the late 70’s, and by the mid 80’s I had had too much of what I call Keystone Quackery. Now, even if I had the ability to pay for any medical attention I would not. That’s me. Though I’m in pain every day, and quite disabled I prefer that torture rack than the ‘experts’ telling me it’s my imagination, instability, or weakness or being the unresponsive guinia pig to big pharmas experiments. Thats me.
    I applaud the courage and strength of each of you on a different path with your choices. Despite this very personal life choice, I am 100% behind all patients in their pursuit of relief, understanding and any healing they can get.
    Part of me is still shocked and heartbroken every time I see examples of this cruel trend in medicine, that it still goes on, all these years later… And likewise I feel joy when stories of compassionate good docs are told.
    It has been many years since I on the merry go round of treatments and try outs that being an RA patient exposes one to. I was a young woman who had been poked prodded and put down too much to continue on that path, and now I’m an older woman who is hurting badly, but content with her choice.
    Despite this, I stand in solidarity with all patients suffering from invisible diseases, and am thrilled to see this new foundation forming. So, even though I am on a much different path with how I live with RA, I, like many people benefit enormously from all the information and connection that you Kelly, and this site offer.
    Also, I recently read an article:
    http://www.happinessinthisworld.com/2011/04/17/managing-chronic-pain/#comment-59644
    Where a physician explains some of the caregivers attitudes shown to patients that they can’t ‘fix’.
    I too wish to help and be involved, even from my disconnected, alternate path. Many blessings and much gratefulness to all who keep on keep’n on

    Reply
  • April 22, 2011 at 4:16 pm
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    Kelly

    Is there a website for the RA Patient Foundation?

    Thanks
    Jen

    Reply
  • April 22, 2011 at 5:01 pm
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    For the life of me I cannot figure out how any rheumatologist could possibly believe that there are joints that cannot be affected by RA. I was diagnosed 23 years ago and have had many rheumatologists, some better than others. Fortunately not ONE ever said such to me. As I understand it, if a joint has cartilage or synovium, it can be attacked by our wonderful immune systems. 😉 I think the ONLY joints that have not had a flare at some point or other would be my ribs. My spine is certainly affected, both lower and cervical, along with the rest.

    Thank you for starting this foundation, Kelly! I’ve been disappointed by the Arthritis Foundation in many ways but I have neither time nor inclination to detail such. Do let us know when you are ready for members to join!

    Reply
  • April 22, 2011 at 5:07 pm
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    This is wonderful news Kelly! I am anxious to see the website and to determine how I can get involved and/or help.

    I remain eternally thankful to you for your efforts on behalf of our community. The quality and integrity of rawarrior.com far surpasses any other RA resource on the web today.

    Reply
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  • April 22, 2011 at 5:59 pm
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    I’m on board 110%! Just let me know what I can do to help. This is amazing news!

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  • April 22, 2011 at 9:12 pm
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    Hi Kelly,
    You already know what I think about this new foundation. Congratulations. Contact me as soon as you need people. I’m available every day. As always, Good work! Job well done.
    <3 Jess

    Reply
  • April 22, 2011 at 9:53 pm
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    Please sign me up to help in some way too!!!

    •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

    And just to add – all those have been said to me also!!! 🙁

    Reply
  • April 23, 2011 at 12:11 am
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    Rheumatoid arthritis and other diseases aren’t proper nouns (except for like Lou Gehrigs)

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  • April 23, 2011 at 8:29 am
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    Kelly, this is fantastic news, please let me what I can do to help, I can’t wait to get started. God bless Kelly, I for one do not know what I’d do without you..

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  • April 23, 2011 at 8:56 am
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    Thank You so much for posting this! I have had RA in my right jaw and neck for years. It wasn’t until last month that my doctor said “low-grade inflammatory arthritis” because there was no other evidence elsewhere. He did start me on Humira. Hmm, that says something that he was not willing to admit a year ago. Thank You! I cried as I read the above article. Finally! Someone believes that it can be in the cervical area of the spine!

    Reply
    • April 23, 2011 at 12:42 pm
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      Caroline, yes, it can be there and its important you keep an eye on it. Take care of yourself.

      Reply
  • April 23, 2011 at 10:01 am
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    Kelly, you work so hard to make a difference. Very excited to read about the Rheumatoid Patient Foundation. I know there has got to be some work to be done to get this off the ground. Please contact me so I can find out what I can do to help!

    Reply
  • April 23, 2011 at 10:01 am
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    Good work, Kelly. All the very best!

    We definitely need initiatives of this kind.

    I would be more than happy to extend whatever help required to the foundation.

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  • April 23, 2011 at 10:24 am
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    I can TOTALLY relate to what you say!!!!!!! I really think the name of the disease needs to be changed!! I am so tired of the doctors, there surposed to be the experts and most of the time I know more than they do!!!! My strength come from God and my fellow sufferers!!! Only they truly understand each and every pain, etc etc that I go through and honestly I dont know what I would do without them!!!!!!!

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  • April 23, 2011 at 10:32 am
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    Kelly, this is just another reason why you are my hero. You work so hard to bring info and encouragement to those living with Rheumatoid Arthritis. And yes a foundation for Rheumatoid disease is surely needed. I totally agree with you on everything. So yes, count me in, sign me up. Let me know just what I can do to help. In the meantime I will pray that God will continue to give you the the wisdom, strength and the courage to do all that you are doing to get the foundation up and running. And of course for all you do at RA Warrior. God bless you.

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  • April 23, 2011 at 1:00 pm
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    Kelly,
    You are a miracle. Thank you for having the initiative to do something like this. And like so many others, I can’t wait to help anyway that I can!

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  • April 25, 2011 at 1:13 pm
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    I am so excited about this!!! Please let me know how I can get involved and when. Will the foundation cover Seronegative RA?

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  • April 25, 2011 at 10:07 pm
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    Hi Kelly, this is wonderful news! I’m all the way in the Caribbean, but whatever help I can give online, I will be happy to. Those doctors at Johns Hopkins may be trying a cover-up. I was diagnosed 5 years ago and within 2 years my cervical spine was affected, I suffered unimaginable pain and had to do several months of therapy for the pain to be ‘manageable’. I have also been diagnosed with scoliosis – and this is from RA! I believe many of us know a whole lot more about RA than a lot of the doctors!

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  • April 27, 2011 at 9:40 pm
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    You go, girl! I’m so proud of you! You have taken leadership where none was, and run with it! I’m ashamed that I have not taken the time and made the effort to do this.

    Please, list the things you need done so we can volunteer for the things we can do, or are best at doing. I know you will post the website as soon as it is up and running. We all are waiting with bated breath for that announcement!

    God bless you! And what a wonderful time to announce it – during Bright Week (the week after Easter)!

    I pray that God will bless this organization and help it to blossom into a riot of bright flowers!

    Love
    Elizabeth

    Reply
  • May 9, 2011 at 8:17 pm
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    Kelly, I am with you 100%. Whatever you need help with let me know, as I live close and am a good worker ant!

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  • May 9, 2011 at 8:49 pm
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    Oh finally, you know I really though that the Arthritis Foundation was the patient foundation. I’m surprised that they didn’t have someone there to represent us.

    Tell me what to do to help you. I’m still trying to figure out how to make the Dr understand that I’m not just malingering.

    Reply
  • May 9, 2011 at 8:51 pm
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    Anything I can do to help Kelly! I’m glad you are starting what we can see as a education point, hopefully aimed at the rheumatologists, the affected folks, their families and so on. We need this so much!
    Again, *anything* I can do to help.
    With much respect, Beth Henshaw

    Reply
  • May 10, 2011 at 1:41 am
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    Kelly, this is such an exciting and busy time for you, and for all of us. I will be keeping you in prayer, specifically for strength, patience, and endurance, as you strive to bring all of this together. I know it will put extra stress on you, both mentally and physically, as well as on your family.

    Thank you for your sacrifice and continued use of your God-given gift of writing and leadership, that will benefit so many countless RA patients and their families and healthcare providers.

    Reply
  • May 10, 2011 at 4:19 am
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    Thanks Kelly & well done to all involved. I look forward to the new site & believe that we can make a difference.

    Reply
  • May 11, 2011 at 7:02 pm
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    Wow- This is great news Kelly, I echo the others. I know how hard you have worked and I know what a milestone this is. You have been so dedicated and persistent. Truly Kelly thank you is not near good enough- please let me know if I can do anything to help.

    Reply
  • May 20, 2011 at 12:16 pm
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    Dr. Nancy Scheinhost in Bryan, Texas, is a wonderful rheumatologist. Her PA, Amber Mick, is also a godsend. They listen, touch joints gently, and spend time with the patient.

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  • July 16, 2011 at 9:46 am
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    I haven’t been diagnosed that long but read about others and it’s about time there was a foundation for RA.

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  • July 17, 2011 at 11:44 pm
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    I found it interesting that you mention the John Hopkins website. One other place people tend to trust the opinions of doctors is the Mayo Clinic. I visited the one in Jacksonville hoping to find a better treatment for my R.A. After two days of seeing doctors, they told me that there was no evidence that I had R.A. and that I should quit taking the medication immediately. After two months off the medication, I was left completely bed bound and unable to even stand on my own. It too two month of complete bedrest before I was able to walk on my own (due to the medication taking two months to build back up in my system). It is scary to me that organizations with such great reputations can derail you life out of a simple lack of understand of your disease. I hope your foundation helps bring about awareness and brings an end to such terrible medical care.

    Reply
    • July 18, 2011 at 10:22 pm
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      It’s very sad to me that I’ve heard similar stories a couple times – of having problems being diagnosed at that clinic. We all know that no place is perfect & it only takes one person to make a bad experience. Of course, I hope it’s not the usual there.
      Thanks for your good wishes & I hope you have good treatment from now on.

      Reply
  • August 26, 2011 at 8:44 am
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    My son has RA, and has had it for 17 years. He was diagnosed when he was 17 years old and he will be 34 next month. He has one of the worst cases his doctor has seen. I believe he is at a point in his life where normal medication does not help him. He suffers terribly everyday. I am trying to find a trial clinic for him. I read an article about the use of placenta lining for treatment of RA. By a doctor named Omar Gonzalez. I am desperate how do you know what is legitimate. My son has had his hips replaced, his knees replaced, his wrist replaced, his other wrist fused. Then the artificial wrist had to be taken out this week and they had to take bone from his hip and fuse that wrist. The bones in his feet have been fused. His back is full of arthritis. They have yet to find a treatment that has slowed down the deterioration of his tissue Nd his bones. He has been on the retuxin and that does not help him either. What else is out there when normal meds do not work?

    Reply

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