Helping the Healthcare World Understand Rheumatoid Disease
The “don’t-miss-the-plane” rush is on. My suitcase is half packed. I have a fever and I’m not washing my hair today because my wrist can’t muster it. Yet, I’m going to get on that plane to D.C.! Why all this bother?
I’ve received messages from thousands of precious people telling their stories and how this website and community has helped them. But they also plead for change and ask what we can do together to make the world understand that Rheumatoid disease is not “a type of arthritis,” but a systemic disease. They tell me…
- They want a way to prove and measure disease activity.
- They want the far-reaching range of their symptoms to be understood.
- They want safe effective treatments.
- They want answers for themselves and their children about preventing the disease.
- They want a cure.
THIS makes sense! And that’s why we founded the Rheumatoid Patient Foundation (RPF). If you are a patient, care giver, researcher, or health professional, I hope you will join us today.
Meanwhile, I’m not going to D.C. just because I love the Redskins! I want to tell you why this is so important. Please watch the video below and read the links I’ve gathered this morning to bring you up to speed on why we are spending our time and energy on this.
Why spend all this time and expense again to attend the ACR meeting this year?
The American College of Rheumatology Scientific Meeting (ACR) is a professional, scientific meeting. It is mainly research driven, although there is a huge commercial side to it. Anyway, the audience is unmistakably medical professionals. I’ve even been told that there are few media who attend such conferences, compared with the old days, since everything is accessible online once it’s released. I disagree and hope you’ll read here about how the context of the ACR meeting itself expands understanding.
Some countries are finding that their rheumatology scientific meetings are more complete with patient voices as actual session participants. Perhaps that will eventually be true in the United States with the ACR as well. Meanwhile nothing is holding back the Rheumatoid Patient Foundation (RPF) who will be exhibiting for the second time this week when we are not even two years old!
Why go to the ACR meeting? How can it help patients?
Watch this Mayo Clinic video interview about ACR where I answer that question in 3 minutes.
What happens at an ACR meeting?
Read my report on ACR from last year for Pharmaphorum here.
Why do we need the RPF and why does RPF exhibit at the ACR meeting?
We will have about a dozen volunteers again at ACR with lots of great resources to both help health care professionals understand the patient experience of Rheumatoid disease AND for clinics to offer as support for their patients! I really hope that you’ll find time today or this week to read about why we need the RPF at ACR as I reported it in the Society of Participatory Medicine Journal.
Recommended reading
- American College of Rheumatology Annual Meeting 2010
- Digging in to the 2011 American College of Rheumatology Scientific Meeting
- Positive Signs for Rheum Patient Activism
- ACR REF Rheum Research & Courage That Won’t Back Down
Wish I was going to be seeing all of you in DC. It was a life changing experience in Chicago last year. Sending my support in spirit – Prayers for energy and pain relief for all of you. So thankful that you’re able to go and speak for all of us!
maybe next time, you can come! We’ll know in a few days what the venue/schedule will be. We’ll miss you April!!
Well done, Kelly !!!! Thanks for continuing to represent us so well.
I am jealous of your DC trip for several reasons – age and RA severity have taken its toll. As a former editor/journalist, I was constantly on my idealistic soap box trying to right the wrongs. As you know, being an idealist in the “real” world today takes constant moxie! If nothing else, let’s change the RA NAME. Am so sick of people thinking a little stiffness in their fingers is related, therefore, what is my problem. I look fine to them! I just called a pharmacy on available XELJANZ date. Nothing yet. I called my rheumatologist and nurse said he had not heard of it!!! Well, lucky me to have such an informed doctor. That’s how it’s been for rheumatologists are scarce. He once told me that when a patient walks in and says they have RA, they want to walk out the other door, for it is such a complexing disease. I have been my own doctor for many years and have passed information to my doctor, which he, in turn, prescribes to me!!!!!!!! Take care/Joanne
Xeljanz will cost over$2,ooo a month? Where do they get it? Out of a gold mine? I am trying to find funding so I can get my next Rituxan infusion in 10 days. The price of biologics is outrageous. Somebody needs to take on the pharmacies for charging such exhorbitant prices for the help that so many of us need. Thanks for all you are doing for us Kelly, we love you. Have a safe and productive trip.
What you are doing is needed so badly.
Take a look at this article published in a paper that gets wide distribution in Nebraska. This was written by a rheumatoid specialist. It is the most convoluted mish-mash I have ever seen. No wonder the public doesn’t know what RA is.
Read it and weep. I have sent a comment, haven’t seen it up yet.
http://www.prairiefirenewspaper.com/2012/08/arthritis-how-far-have-we-come
Dear Kelly,
Several months ago I wrote to youe about my treatment of RA using a potent synthetic Cannabinoid research chemical, AM-2201. I just wanted to give you an update.
I have a rare leukemia that in about 1/3 of the patients with it get RA. I fall into this group. It also causes severe chronic neutropenia (absense of neutrophils, a white blood cell) and blood count irregularities.
As of today my blood counts have returned to normal and I have no RA symptoms, and I am in full remission. This is unheard of without some sort of chemotherapy like Methotrexate, Cytoxin, or Cyclosporin A.
I am absolutely positive this this compound is responsible for the remission. The counts took about two months to improve. My Oncologist is baffled. I can’t tell him what I am doing since AM-2201 has become Federally Scheduled under the Controlled Substances Act. I have no desire to be thrown into prison, loose my job, loose my savings, so I can only speak anonymously.
I hope this is in some way helpful.
The Cannabinoids show great promise in RA treatment. However, given the political climate, they will never be used, and research has been quashed by this government.
What do I think? I think we are so lucky and blessed to have Kelly as our voice. I am so filled with hope and gratitude whenever I read RAW. What can I do – to help you, Kelly, with your mission?
Thank you Kelly for being the voice for all of us! The patient voice is sorely needed. I have panic attacks when doing public speaking, so I am SUPER impressed with your ability to calmly and clearly give information!
Best wishes for managing your Spoons throughout your trip!
Kelly, thank you for mustering the courage to represent us at ACR. This is one of the most important initiatives you can fund. The trade show gig is brutal for ‘normal’ people. Sending prayers of strength and comfort to you and the team! Jodi
Thank you Kelly..for always being the lead of the pac!
I don’t know whether I want to cry or scream after reading that article.
Sorry this was supposed to be in reference to the article J Wilke posted.
I also want to thank you again Kelly.
Thank you for everything you do for us, this type of suffering has got to be pushed to the forefront of Doctor’s, Lawmakers, drug manufacturers’ minds. This disease is needs a cure!
Kelly, Thank you for being our amazing RAWARRIOR, you give us all HOPE. forever grateful for the info from your site, Rebecca Richard
Kelly you are an inspiration to all of us. I hope your voice will be heard!
Thank you, Cathy!
Kelly, another thanks to you for all the work you do on our behalf. You have 24/7 RA to force you to keep at the fight 24/7. God let you have it continually because most folks with flares and remissions would treat the pursuit and activism with flares and remissions, too. He wanted someone at it constantly, to encourage and help the rest of us, and I thank you for being that one. I was just put on hydroxychloroquine for the first time this week, first RA treatment aside from whole bottles of ibuprofen, first diagnosis. I just wanted to make a suggestion for your site that would help folks. You post the entries on the main page with dates, but if you link to the entry randomly there is no date to be found, so it’s hard to tell what’s recent or what might be out of date info. Maybe you could put the date in the entry’s main text, too. Thank you again for your work; I know the Lord is paying attention, even when it feels like nobody else is.
Hi Tom,
The idea has crossed my mind too. But I still hope I can catch a break someday! If I can, I will not forget the needs of so many suffering.
You should be able to find dates below each article with the copyright and category information. Are you using a mobile phone or a computer?
That’s embarrassing. I see it there now in little text. I’m browsing using my iPad. (IPad’s touch screen is wonderful to use on bad hands days.) I looked and looked but now I see it. Sorry, false alarm!
I’m beyond depressed. I am thankful for every little blessing and appreciative. BUT, I need help. I honestly have reached my limit. It started 2 years ago, I got soo depressed that every day was a battle to not give into the pull of ending my life. I mean complete despair. I was in an unhappy relationship of 18 years and I had also been feeling horrible but I thought it was from the depression. It was so bad I could not get out of bed most days. I finally was able to get a rent house that was affordable as long as I could pick up a second job. So I made the leap, starting over at 46 yrs old. I kept feeling soo bad and constantly late for work, cry uncontrollably for hours at work, felt like I was DYING. A complete mess physically and mentally. I would (still do) take Tylenol with caffeine all day long just to get through my days. I couldn’t eat and kept feeling like I was hit by a car. I also got rashes around my neck and so sick I couldn’t function. So much for a second job. So a week after moving in my new home, I begged my doctor to test my blood again cause now I couldn’t walk on my ankle. Finally diagnosed with RA in May of this year. I’m getting the worst care and im on PLAQUENIL I have to go to a charity hospital which is on the verge of closure. I cannot get an appt for 8 months. The Mex has made broken cap polarizes all over my body and the sun makes me feel like I’m on fire. It also makes me feel horrible. I can’t afford a doctor, let alone a rheumatologist! I’m out of sick days at job and check will be short every time I miss work which is a lot! A regular check for me is 1000. monthly. I can’t afford groceries or gas. I was denied Medicaid because I have very very few medical records because of not being able to afford a dr. I was also denied an early retirement because of no notes from a Rheumatologist also!! I’m on verge of being homeless and because I don’t have minor children, still don’t qualify for ANY gov assistance!
I’m back in depressed mode because I’m at a total loss as to living life
Jill, I’m sort of in the same boat. What state are you in? If you are divorced or even separated, apply for food stamps or any other assistance, this will cut down on living expenses and therefore help you pay for more medical care. Also call local hospitals etc and ask about low cost cash pay labs for blood work. Here in north Florida we have PRO LAB, they charge less than half regular prices on labs. My rheumy gives me the orders and i go there and they fax to her. Just telling my Rheumy that I have no insurance or income, she gives me a fantastic discount. Talk to your doc.Some hospitals have a program called uncompensated care, I didn’t qualify this year because I was married and had too much income for 2011, but will qualify next year, it will cover most of my Rheumy’s bill. It is a slow process when you are broke and uninsured and unemployed, but don’t give up. I pray that the Obama Care Act will hopefully help people like you and me get some kind of afforadable care. Also try Care Credit.com it is a no interest credit card for medical care, not accepted everywhere, but you can check online for facilities in your area. I hope some of this helps, you will be in my prayers.
Kelly, love this site, it has been SO informative as I am newly diagnosed just 3 months ago. Just went in for my 3rd visit , my first with the ARNP, and am amazed how far things have come since reading through your first posting years back. My rheumatologist Dr and ARNP actually did hands on exams, although I wonder how well one can determine swelling when feeling through jeans seams and sweaters.Am now enjoying the free RA pamphlet provided and finding out “How You Can Conquer RA!” , and how I am an important member of the team! , and that I should shoot for remission so that I won’t have any swollen or tender joints that many RA patients no longer have….