More than half of rheumatoid arthritis sufferers have to visit their GP three times before they are diagnosed as doctors are not being trained to spot the symptoms, a charity report claims.
Low diagnosis rates and a lack of understanding of rheumatoid arthritis by GPs are still rife three years after a report aimed at improving services for people with the condition, a survey by Arthritis Care found.
The charity more than half a million people in Britain who suffer from the condition are “systematically and appallingly let down by the NHS” with £8 billion a year being spent on services which are in “disarray”.
Most of the recommendations made three years ago in a Public Accounts Committee report aimed at improving rheumatoid arthritis care are yet to be implemented, the charity added.
What advice would you give to someone who has just been diagnosed with RA?
Never give up!
Do you use any mobility aids?
Not anymore, when I was small I had to use shoe supports and knee braces.
How has living with RA helped to improve your life?
It has made me stronger, more determined to reach my goals.
Do you have any visible signs of RA?
I have one thumb that is longer than the other. One foot is bigger than the other. One leg is slightly longer than the other. Still some signs of swelling in my knees they are larger than a normal childs.
Can you please describe some of your favorite coping strategies for living with RA?
I like to draw, read or anything to take my mind off my aches and pains. Sometimes, I just curl up with my mom.
Can you please describe your current medical (traditional and alternative) treatments?
I have no medical treatments at this time, as a child my body would not process the drugs so I could not take anything. Hot baths help a lot.
Is there anything else about yourself that you would like to share?
I want to grow up and be a singer, maybe you will see me on “American Idol” at some point.
Which means that I’m just a tad bit older than I was in this photo on the left, which was taken at my first birthday party!
My birthday wish this year is to turn Show Us Your Hands! into an official 501(c)(3) nonprofit organization. Will you please join me in celebrating my birthday, by contributing to the Show Us Your Hands! Start-Up Fund?
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Nine years ago tomorrow–on the day that I turned 30–I submitted a letter of resignation to my manager. My roaring twenties were over, and I could not be happier. By all practical purposes, the previous decade had been filled with many different successes: I graduated from Columbia, I graduated from Harvard, and only a few years later, I was earning more money from my corporate job than I could have ever imagined.
When I walked away from that job, not knowing what my immediate future had in store for me, the thing that surprised me the most was the private response that I received from many of my co-workers: they would pull me aside, and whisper to me that they wished they had the courage to do the same thing. Yes, I know it was slightly unnerving to be jumping into the unknown…but the way I saw it at the time, I was moving away from what a world that I knew was not for me…and as long as I framed my decisions in this way, I knew that everything would be okay.
I was leaving an environment where backstabbing was the norm, and where innovative ideas were something to be shot down, and not supported. I was leaving a job that required me to work in a climate-controlled building, where one could not even crack open a window and enjoy a slight breeze. I was leaving a life that required me to spend two hours each day (minimum) in my car, driving to and from the office.
Within a year (seven months later, to be exact) my partner and I had packed our things and moved to South America, with our dogs on tow. Based upon the lowered cost of living, our savings would easily last at least two years. For someone who previously longed for a slight breeze during the day, being able to enjoy the winds two miles up in the sky on top of the Andes mountains was one of the best things ever. We told ourselves that at the end of two years, we’d re-evaluate our options and decide what to do next. In the meantime, I was going to start studying some of the local stone and adobe architecture, which fascinated me to no end.
And right around this time, rheumatoid arthritis entered into my life. (Looking back I can now see that the initial signs actually started a few years earlier when I was still in the U.S., but I didn’t know it at the time.) Even though I didn’t have either insurance or a steady income, I still remember thinking–during those initial few months–how glad I was that I no longer had to go into an office every morning. (Which, based upon my condition, would have basically been impossible.)
And upon receiving my diagnosis, and being told that my treatment plan would primarily involve medications–medications which I could purchase for a fraction of what they cost in the U.S.–I felt like this was a blessing in disguise. A lot of people who I had met soon after moving here assumed that I would immediately return to the U.S. for treatment…but going back to the U.S. for something that I could receive here at a much lower cost seemed slightly counter-intuitive. So I stayed.
I often think back, and wonder how much different my life might have been had I not stepped away from my corporate job or left the U.S. right before RA (at least during the initial years) took over my life. It’s not that I’m second-guessing any of the decisions I made; in fact, I think that things would have been even more challenging had this disease entered my life while I was still in the corporate world or in the extremely expensive U.S. healthcare system. In the end, I don’t really know.
What I do know, however, as I near the end of my 30’s, is that I am happier than I have ever been before…and I think that a lot of decisions I made almost ten years ago, before I even knew what rheumatoid arthritis was, have played a critical role in allowing me to reach this point.
As I look at the successes that I’ve achieved over the past decade–as private and personal as many of them have been–I’m beginning to feel that my more ‘public’ achievements during my 20’s pale in comparison. One more thing that I didn’t realize at the time, but can now see with the help of hindsight: when rheumatoid arthritis entered my life, I had a choice. I could either allow it to make me angry, bitter, and sad. Or, I could figure out a way for it to improve my life, and to make me even more happy.
I originally started down the former path, but ended up on the latter after I (surprise!) saw that things weren’t working out as I wanted them to. And this, without a doubt, will always rank high on my list of achievements. I sometimes used to think that my life would have been so much better without RA. Now, I can’t even imagine where I would have been without it. I know this may strike some people as being an odd sentiment…but for me, it makes all of the sense in the world.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
I’m tired of having only negative things to say when I post to RheumaBlog. After all, there are lots of positive things that happen in my life every day; it’s not all doom and gloom. But the fact is that I wake up each morning stiff as a corpse. The first hour of each day aches, literally; the dose of painkiller that I took before retiring the night before has worn off completely. The new, first-thing-in-the-morning dose takes about an hour to work. My creaky joints loosen up some. Even then, the pain isn’t gone. The drug dulls it and sends it into the background, but it’s still there, mocking me, reminding me each time I move that I have rheumatoid arthritis and its co-morbidity, trochanteric bursitis, and that the many therapeutic drugs I take to keep it under control don’t seem to work very well.