What If Rheumatoid Disease Were Recognized, Properly Funded & Medically Understood?
Just think. What if you told people you have RA and they actually knew what that meant instead of dismissing it? What difference would it make if Rheumatoid Disease had comparable NIH research funding to understand what causes RA? What if there were treatments that worked for all RA patients? What if newly diagnosed RA patients had the kind of support and tools that are available for other serious diseases? What if there were mounting resources leading to a cure for RA?
I could go on and on. But you get it: There are certain obvious and specific things that absolutely must be done with regard to Rheumatoid Disease. The kinds of things that people ask me every day: “Why hasn’t anyone ______?”
As a matter of fact, I’ve heard desperate people ask dozens of times “Why doesn’t the RA foundation work on this?” Of course there was NO “RA foundation” to do any of those things.
Every issue we discuss here at RAW is a need a patient foundation should address!
After a couple years, the need for such an organization was obvious and the burden for it intense as I recognized what MUST be done. I had numerous meetings and discussions, as Katie Beth, Kevin, Barb, and others could tell you. And what my dear friends would tell you is how long I resisted doing it myself – because I have unrelenting RA and was already working more than 40 hours a week as a volunteer with RA Warrior. I just didn’t see how I could add another 20 hours a week to start a non-profit.
But we kept meeting and discussing. And patients kept asking, “Why do people think RA is just arthritis?”Or “Why isn’t there more progress toward a cure?” Until a group of us became convinced that WE MUST DO IT OURSELVES AND WE MUST DO IT NOW.
So a year and a half ago, we founded the Rheumatoid Patient Foundation (RPF), with the determination that the next generation will not face the same the same roadblocks we have with RA. We will not allow our children to suffer in the same ways we or our loved ones have.
If I write about certain topics, hundreds will comment! But the solution is the SAME for each one: RPF!
Last night, I went to the newest phase of the RPF website and became a Lifetime Charter Member. I was happy to see a few dozen of you are already there. I hope thousands more will follow.
If every person who’s wanted greater awareness after being told “Oh yeah, arthritis, I have that too,” will join their voice, then we will quickly see a consciousness-raising.
If everyone who has failed a treatment will add their voice, then we will quickly be a force for a cure.
If every person who suffered long painful months or years before a diagnosis will join this cause, then the government of the U.S. will no long be able to ignore this terrible disease.
I wish I could speak to every one of you personally and I probably will speak to many of you over the coming years. I have spoken to hundreds of you already – thousands more on the blog and social media. Our young organization is flooded with opportunities. The Board of Directors and I are working very hard along with volunteers to meet those opportunities courageously. I hope you will join us. Ask your good doctor or nurse to join us too. And share this cause with everyone you know who cares about RA patients.
Click here to join RPF today and you’ll get an awesome membership kit with our new Rheumatoid Disease Awareness Card and I’ll see you in the RPF forum!
This afternoon I have one more neck injection. I’ve lost track of the schedule – I think it’s a facet injection this time at C2. My neck is very crunchy and painful now so hopefully it will help.
NOTE: Together with three other patient advocates I admire, I have an opportunity for a Panel at SXSW. We are confident we can bring the patient perspective front and center in a way that will make a difference. TODAY is the last chance to vote so if you have time today PLEASE VOTE for us by clicking Thumbs Up and click LIKE. It will only take a couple minutes. (Edit 6/1/13: outdated link removed.)
Recommended reading
- 20 Replies to Things Not to Say to a Rheumatoid Patient
- What’s the Big Deal about Rheumatoid Disease?
- Will Venus Williams’ Sjögren’s Syndrome Help RA?
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I’d love to join the RPF, but…right now I just don’t have that kind of money. We live on 800 dollars a month (and only by God’s grace do we manage that). RPF is just a dream for me right now.
Christina, we’ll be in touch by email. We’re setting up a scholarship program. Another member could sponsor you. Also, I’ve seen a couple of memberships given away already in contests on Tanya’s site – geekgoodgirl.com so you might keep an ey out there.
Kelly,
I set up an account to vote but it wouldn’t open the sign in page for me. Sorry.
crystal
i think i have this & suffering for almost 2 yrs now… happy to know more about this sickness… to know of it’s medication…
Had an interesting exerpence this weekend. Fisrt, I took my first humira shot with the assistance of my paramedic daughter and did it badly to boot. I was surprised by the burn and let up on the pressure letting some of that very expensive medication run down my leg. Arrrgh!
Second, my sister, her husband and her daughter and grandson all were visiting for the holiday. They asked me a lot of questions about RAD and it’s treatment and expressed caring and concern. My sister works in the nutrition dept. in a hospital and was surprisingly informed. When I said I had RAD, my niece said “Oh, I’m so sorry!” – what a different response from the usual, “Oh, I have some arthritis too!”. Surprisingly, she understands what this disease is like because she schedules and sometimes guides bus trips for a company that does bus tours and deals with the accomodations and disabilities that people with RAD have.
Talking to someone about my illness who already understood how serious and disabling the disease was and who had some concept of the pain and illness that go with it was a very different experience than most of the conversations I have had. You are so right to focus on education. We need people to understand before they encounter us.
If people understand what we are up against, they will be more understanding and accomodating when we can’t quite come through. And that does happen.
Kelly, I have been looking for someone who understands this disease. The closest people i get in relation is a distant cousin who got diagnosed when she was 16 and my husbands grama who did nothing for 8 years and now is severly deformed. Me personally I fount out after a couple of doctors and a rheumatologist later that I had palindromic rheumatism. I am currently 19 and have been have symptoms for almost 2 years. I started questioning what was going on when my foot started puffing up like it was broken for a week then all of a sudden it would be normal and go away. Eventually my hands started aching. Being 19 I go to school full time work a part-time job, and am a wife full time. The stress of everything had been getting to me, most people when I say I have rheumatoid really don’t understand. My first doctor bill was around 300.00 for the initial visit, blood testing and such. My insurance is about 70.00 every month, plus the 35.00 copay, my insurance will not touch anything dealing with the rheumatoid. Due to the last doctors bill it looks as though the average bill will be about 100.00 every 3 months. I have looked for grants or scholarship but have come up quit dry and for badger care ( wisconsin’s health insurance) their is a wait list a mile long. So my only chance right now is to get pregnant which neither me or my husband wants yet. I do not wish to be on methotrexate for the rest of my life but do not see much of another option unless i would like to be crippled by the time I am 40. This is a very mental battle for me. Currently, I have eliminated gluten from my diet to see what happens, as my mom is a celiac. If anyone has any advice it would be much appreciated. God Bless
Dear Faith,
My heart just went out to you when I heard your story – I was also married young and worked and went to school – but the RA symptoms I had were only for a few days at a time and in between it was normal. Back then, it could not have been diagnosed even. But we had no insurance for many years and I had thyroid disease since I was a kid so I had to find ways to pay for care at times.
Have you asked the doctor about taking a different medicine since you’re so young and might want to have children within a few years? This might be an exception that could help him get another medicine like enbrel approved for you and in that case – the pharma companies have assistance programs to help pay for the medications.
I’m not sure if you’re considering pregnancy in hopes of remission? If so then I have to tell you it doesn’t happen for everyone – and most people have worse flares afterwards – so it’s no guarantee to make the RA easier. Did you talk with the doctor about these concerns? He should work with you to help you treat the disease as aggressively as possible while it’s still early.
My Doctor told me methotrexate was the cheapest option available, as to right now that is all I have done I am not sure what else I could do to afford it. You mentioned pharma companies helping to pay for meds? How would I go about figuring that out? Is their any government methods for helping that I don’t know about? We do eventually want to have kids my doctor said we would need to plan 3 months in advance as in me go off of the methotrexate and then try for kids. Currently we use the IUD paragard to prevent a pregnancy so far. We are thinking about kids after my husband graduates from college so we still have a couple years. My mom has a thyroid condition also, and is a celiac (this is genetic). By the way you responded on my birthday! I am now 20. Your words are very helpful knowing someone cares.
Dear Faith
They usually start w/ the mtx for a couple months anyway. But if your dr prescribes a biological he should know how to help you apply for the programs – but there are also websiteS for each brand such as enbrel or actemra. They try to make it easy as possible to get it covered for a while. Also, this is sometimes what is preferred for young women who may choose to have kids but like you said, if you are very careful, you can let the mesh ave 3 months to leave your system. Keep in touch & ill be glad to help you figure it out.
Happy birthday! You’re almost exactly the age of my KB who is my right hand in many ways.
Every so often a nurse will ask me why I am not taking CoQ10 supplements because of my RA. None of my doctors have suggested taking it which doesn’t necessarily mean anything to me since they often don’t suggest any Vitamin supplements. Is it pretty common for those of us with Rheumatoid Arthritis to take CoQ10? I’m on Methotrexate injections and folic acid, Lipitor, Levothryoxine, plus a multivitamin.
Hi Donia, I don’t think it’s common no. And I saw a recent news report that the previous claims of it were recently disproven – not that there is no benefit to it -I don’t know but it’s not an RA treatment. I do think a lot have taken omega3 capsules although the inflammation of RA is so severe that no amount of that would probably help most of us, but maybe with mild RA it would.. either way, it can help the dry eyes somewhat and may help the heart.
Kelly, this February my husband and I are going to Yei. Africa to my grandparents orphanage. I am currently a student at Northeast Wisconsin Technical College and in my fourth semester of my 2 year degree in Digital Media Technology. We are going to make a video for my internship this coming February. (My degree is in video, audio, internet broadcasting, and photography) So this will be my first experience in the missions field and switching over medications so I will have to consult with my doctor about going on it when I get back from my trip! Thank You so much for all of your input so far.
That’s awesome! I know the video will be wonderful. I have friends in Kenya – what country are you visiting? Maybe you can work with us on a video project sometime. We have lots of plans w the foundation (RPF) for more video projects etc.
video was my main loss from the crash this past month – video is not backed up even when u pay for it, unless you mark it – anyway, I’m starting over w a Mac – any suggestion for video editing program?
Kelly, The Place is in Sudan so it is close to Kenya, the organization is called Harvester Reaching The Nations. An I love video it is my passion I am a mac person to that is what my entire degree is based off of. I would love to help with your organization, and possibly making videos. I can show you how to back up stuff and editing. The general public uses a program that is called iMovie, it is free on your mac. I have a program called final cut pro x it is a professional video editor which runs for about 300.00 dollars which is not bad considering what programs like this would normally cost. I personally prefer final cut because it has more options. Also I would invest in an external hard drive such as seagate tb. You can back up your entire computer on to it. A mac is a great investment. http://www.youtube.com/watch?v=N7Q85D-LZFw
this link is a video I made with the help of my husband to raise support the only thing that has changed with the video is if you send a check and want it to be tax deductable it should be made out to cedar springs church, and in the memo box put something called africa trip or such. I am still working on honing in on my skills this video was made with final cut x and was made as one of my first videos with it.
http://www.youtube.com/watch?v=NX6he1ooPNc
this second video I made is for my parents organization here in wisconsin ( more of one of my favorites)
If you can find me on facebook I would love to keep more in touch 🙂
At 33, I was diagnosed in Aug, 2011. Now I am 34 and have decided to try to stay at home to be a wife and mother. Because of this decision, I am having trouble finding insurance coverage. My arthritis is under control for the moment, but still am being denied for personal coverage. I am so frustrated and defeated because I feel I need to be home with my babies, but it seems the only place I can get Major Medical coverage is in the work force…I pray everyday for God to help me through this, as I do feel that is where to be.
Hi Kelly,
Have you heard about Polymyalgia Rheumatatica? If you have could you explain it to me please?
At 37 I was diagnosed with moderate to severe RA. I am now 44 and have my ups and downs..
I have tried MTX alone, Humira and Remicade and have had no luck with any of them.
I am currently on Orencia. Discussing switching to Actemra due to the Orencia not controlling flares.
I am currently in a flare and back on PREDNISONE. My thumbs are terrible… I find myself in a thumb to palm closed fist position all the time, without purposly putting them like that.
I also have to stop my MTX due to my liver count recently testing high.
Im very discouraged… Any personal experience with Actemra would be appreciated. Also… info on my liver count being up… I was told this time it is 2 1/2 x normal. My last blood work, which was 3 months previous, read normal. Is this big jump in a short time frame? Is 2 1/2 x normal really high?
I do have an appointment with my rheumy this coming week. Im just looking for some insight before that appt…
Thank you and I too would love to join RPF, but right now dont have the money….
Hoping to hear some feedback soon.
TOGETHER… WE WILL FIND A CURE. FOR NOW…. LETS JUST HELP EACH OTHER GET THROUGH….. <3