Rheumatoid Arthritis. The name strikes ambivalence in the minds of most who hear it. Those who have it, though, know the truth – RA is a deadly disease. Five years ago, I too would have been ambivalent. Rheumatoid arthritis? Achy joints? Happens to everyone eventually, right? Fortunately, no!
Rheumatoid Arthritis bears little resemblance to “common” arthritis (i.e. osteoarthritis). As a genetic autoimmune disorder, RA basically sets your body’s immune system against your own body. The most common symptoms appear in joints and connective tissues, but RA also inflames tissues around the heart and lungs. It can cause inflammation of blood vessels, and frequently affects blood chemistry, with chronic anemia being a common symptom. It can also cause the body to try to absorb the teeth and some bone (called resorption).
Many of my close friends, and all my family, know I was diagnosed with Rheumatoid Arthritis a few years ago, but now I’m telling the world:
I have Rheumatoid Arthritis!
Why the big public announcement? Because in today’s world, every disease needs a public face, hopefully backed by distinct icons, to ‘promote’ it – at least if you want to find a cure. Ideally, some big name celebrities would line up and proclaim their support for finding a cure.
Failing that, those dealing with a serious disease need to stand up and insist on better research for a cure. Everyone needs to see that the disease can strike randomly, hitting a wide variety of people. So I proclaim my affliction. My inspiration for this declaration comes from a woman whom I greatly respect and consider a friend, though we’ve never officially met. Kelly Young, an incredibly strong, dedicated mother has battled RA most of her life, though didn’t receive an accurate diagnosis until well into adulthood. Today, she champions the battle for a cure – and for better understanding – of RA. Her blog proclaims her well-deserved position in this fight: RA Warrior! (rawarrior.com)
So I’ll stand with Kelly in the fight. Perhaps we can forgo the big-dollar PR campaigns and make finding a cure for Rheumatoid Arthritis a successful campaign supported by modern Social Media. RA patients have stories to tell, and together we can make a difference. I gladly join that campaign. By sharing our stories, we hope the public will better appreciate the true, terrible, nature of this disease, and then join us in seeking a cure.
What does RA mean to me?
I am an outdoor journalist, writing about hiking, climbing, skiing, snowshoeing, paragliding, kayaking and cycling for a variety of regional, national and international publications. I’ve been playing at this profession (passion?) since the age of 23. Prior to that, my outdoor adventures were purely for recreational purposes.
So, for the last 21 years, I’ve been paid to play outside, pushing myself through some pretty intense physical activities.
Today, I no longer fly my paraglider – I can’t trust my shoulders and hands during moments of stress (and moments of stress in a paraglider are exactly when you need to trust your arms and arm strength).
A common symptom of RA that I unfortunately have is chronic anemia, so when I hike and climb, I have trouble moving enough oxygen through my blood to my limbs. This is especially troubling at altitude. For instance, a press ski trip at Snowbird (summit: 11,000 feet elevation) outside Salt Lake City a few years ago left me gasping like a fish out of water after one powder run. I was deep into oxygen debt almost from the get-go in part because I was uninformed. At the time, I didn’t know that anemia was a part of the RA experience. A day later when I saw my rheumologist, he apologized for not warning me – and then casually mentioned that I was lucky I was still alive. Turns out, my hemoglobin levels were so low the doc was amazed I was even conscious let alone skiing near the 10,000-foot level. (NOTE: a huge “thank you” to my friends Chris Denny and Jessie Bender – PR masters at Denny, Ink – for helping me that day).
Fly fishing has claimed much of the time I previously spent paragliding, but at times, I can barely hold a fly rod. I’ll frequently sit with my hands and wrists sunk into the cold rivers I fish in an effort to reduce the inflammation enough for me to make a few more casts.
After a long multi-day backpacking trip, I usually suffer a severe “flare-up,” meaning two or more joints will seize up, causing intense pain in even the smallest movements. I’m basically done in for several days after a long outing.
Since the onset, I’ve fought to stick with the least invasive medical treatments, since the side effects of the medicines can be nearly as nasty as the disease itself. But the mildest treatments are no longer making a dent in the disease, so today, after seeing a couple new rheumatologists; I start a new treatment regimen. Methotrexate and prednisone. Methotrexate is a chemotherapy drug. Prednisone is a corticosteroid. The drugs should suppress my immune system enough that the worst flare-ups will be prevented, and the daily aches will be tolerable. But the methotrexate will also exacerbate my anemia, so I’ll be even more out of breath the next time you pass me on a trail!
Also – and this is truly tragic!! – methotrexate can cause liver damage, and alcohol severely exacerbates the problem. So as of today, I give up red wine, beer, single malt scotch (!) and all other forms of alcohol!
Finally, by the simple expedient of being diagnosed with RA, the insurance actuaries loped 10-15 years off my expected life span. Nice! Now I need a drink! ;^)
Pink Ribbons. Yellow rubber bracelets. (Red) everything.
These icons of strength inspire us in the battles against terrible diseases. All mark worthy causes and deserve the support their campaigns have gained. But what about lower profile diseases – conditions that still cripple and even kill people, but which lack celebrity spokes-models and cool PR campaigns? Conditions like RA?
Breast cancer research, with its iconic Pink Ribbon, receives phenomenal support from the public and has many celebrity spokespeople. We’ve all seen and heard the compelling stories of Breast Cancer Survivors. Lance Armstrong beat testicular cancer and went on to win the world’s most difficult race a whopping seven times. Today, Armstrong’s Livestrong yellow bracelet marks the fierce battle against all forms of cancer, with one of the world’s most recognizable sports figures as the leader of the movement. The (red) icon meanwhile is used on everything from iPods to Hallmark cards as a way to increase awareness of, and support for a cure of, AIDs in Africa. U2’s Bono is a leading figure behind this campaign.
Rheumatoid Arthritis has no icon. No celebrity spokesperson. No non-profit solely focused on finding a cure. Indeed, there is no real understanding of this disease among the general public. I live with Rheumatoid Arthritis, and it has affected every aspect of my life. I live an active lifestyle, both personally and professionally. I still enjoy the adventure life, but I pay for my time in the mountains in ways I never thought possible.
HOW YOU CAN HELP
You can help by reading this, and accepting Rheumatoid Arthritis as a serious, potentially fatal, disease. The more people who understand RA, the more likely we are to see funding for research and real progress made for a cure.
If you want to make a donation, you can do so through the Arthritis National Research Foundation: http://www.curearthritis.org/. Please specify RHEUMATOID ARTHRITIS as your donation goal in the comments box, or perhaps selection the Kelly Award as the donation recipient (the Kelly Award funds research into juvenile-onset RA, though that will aid all RA sufferers).
I’d also encourage you to talk to family and friends. Historically, most folks with RA were afraid to come out and admit their ailment. They thought it made them appear weak or frail. Many celebrities have suffered in silence, hiding their ‘shameful frailty’ rather than using their celebrity to promote a cure.
I’m not frail. I’m not weak. And I’m not bashful about speaking my mind. Yes, I do have RA and yes I do suffer. But no longer in silence. I have RA and I want a cure. Will you stand with me?