Suiting Up to Fight Rheumatoid Arthritis
http://www.everydayhealth.com/rheumatoid-arthritis/suiting-up-to-fight-rheumatoid-arthritis.aspx
Max Hamburger was 13 when his dad could no longer play catch with him.
“He couldn’t toss me a ball, couldn’t catch a ball, couldn’t go bowling with me,” he says of the time when his father developed rheumatoid arthritis. “At that point in time there was very little that could be done, and so his joints were very badly damaged. I watched him die way too early.”
Seeing his father’s struggle with RA probably had a “huge influence” on Hamburger’s decision to become a doctor, he says. And as a way to better understand what his dad went through — and what his RA patients are experiencing now — Hamburger, a rheumatologist in Long Island, N.Y, agreed to try on a suit designed to mimic the experience of living with RA for Everyday Health’s Stephanie Sy.
Understanding Rheumatoid Arthritis
According to the U.S. Centers for Disease Control and Prevention, about 1.5 million Americans live with RA, an autoimmune disorder that causes pain, stiffness, swelling, and loss of joint function.
“Rheumatoid arthritis is one of the most common forms of inflammatory arthritis,” says Dr. Hamburger. “The immune system’s job is to defend us against disease, but in RA the immune system is tricked in some way into thinking that some part of us shouldn’t be there.”
The peak age of onset for RA is late thirties to early forties, but teenagers can develop it, too. Hamburger’s father was 40. “I’ve seen people start with their first episode into their nineties,” he says. “It doesn’t respect age.”
There’s no cure for RA, so treatments focus on managing pain and inflammation, minimizing joint damage, and slowing the disease’s progression. Medications used to treat RA include disease-modifying antirheumatic drugs (DMARDs) such as methotrexate and sulfasalazine; biologics like Enbrel (etanercept), Humira (adalimumab), and Remicade (infliximab); corticosteroids; and anti-inflammatory non-steroidal drugs (NSAIDs) like aspirin and naproxen.
The RA Experience
The “RA Experience Suit” is worn with gloves that restrict wrist and individual finger movement, boots that stiffen the ankle joints, and a collar that restricts neck movement. The one-piece garment is intended to simulate the stiffness, loss of mobility, and fatigue common with this disorder, and was developed by a German couple, RA patient Dr. Gabriele Brieden and rheumatologist Dr. Matthias Oraschel-Brieden.
Dr. Brieden said the idea for the suit came after she and her husband realized that healthcare professionals and others were unaware of the many everyday challenges faced by RA patients, according to a press release.
After just a few minutes in the suit, Hamburger’s breathing is labored. “This is exhausting,” he says. “The discomfort in my shoulders, elbows, and knees…[in] the hand, I don’t have flexibility. There’s not a part of me that doesn’t feel uncomfortable except the top of my head.”
Lumbering and stiff-legged, Hamburger finds the simplest of activities, like walking the short distance from his conference room to his office, typing on a computer keyboard making a phone call, or even sitting down, is more difficult. “My stride is a third of what it should be. I can’t get my arms to move like they normally do — [they’re] stuck like this, so it’s incredibly limiting.”
People with RA must work three times harder to move their joints than those without the condition, Hamburger notes. “Yet the disease damages their muscles; they end up with muscles that aren’t good and joints that have a high resistance to movement.”
“[The suit] is supposed to make you feel like you’re a patient,” Hamburger says. “It’s doing a very good job.”
Rheumatoid Arthritis: A Patient’s Perspective
Bess Schear knows all about the limiting aspects of rheumatoid arthritis. Just 24 and newly married at the time of her 1983 diagnosis, Schear was taking dance classes and hoping to teach dance when she began experiencing pain in her right shoulder.
“All of a sudden, I started to feel the pain in my finger — in my thumb, then my pinkie. My right hand was affected much more than my left,” she says. “I was starting to be in pain, serious pain.”
Rheumatoid arthritis tends to run in families, and Schear’s sister had already been diagnosed with the disorder, she says: “This was not a complete shock.”
Now 51 years old, Schear says RA has had a big impact on her life. “I’m a cook,” she says, “but I can’t reach up — I have to stand on a stool to get my soy sauce and my sesame oil. I can’t get to my wok, I can’t get down to my sauté pans.” Besides causing knee and back pain, the disease has affected her feet. “I remember buying new shoes that felt great in the store — soft — and then just trying to walk up the avenue to buy some stuff. The pain I was in, I couldn’t believe it.”
When she was first diagnosed, Schear says, a tool like the RA suit would have helped her doctors understand what she was going through. “Early on with the physicians I saw, they were like, ‘Take this med, and you’re going to be all right.’ A suit like this can truly simulate the pain and stiffness and suffering that an RA patient goes through. It can’t actually ever tell a doctor specifically what it’s like to live with a disease such as RA, but it can increase their empathy.”
A Better Future for RA Patients
Hamburger says that since his early training, newer, better treatment options have made life easier for patients with rheumatoid arthritis.
“When I started in 1976, what we could offer to patients was precious little,” he notes. “That’s changed enormously. When I sit with a patient with RA — particularly if I get to them early enough — I am rightfully optimistic. If that patient and I work cooperatively together, their outlook is very, very good these days. And it will get better with the newer drugs that are coming.”
Schear, who tried many RA medications before finding one that worked for her, agrees. Now, she says, “I can get my socks on, I can get off a sofa by myself, and those little victories are so wonderful.”
“There’s always a little part of me that says, ‘Gee, I wish we could have done this for my father,’” Hamburger says. “But we started a fund in my parents’ name with the Arthritis Foundation, and I try to keep his memory close while I do what I do.”
Wearing the suit, he says, has only strengthened that resolve to help RA patients. “It’s going to change my perspective on everything I do.”
Do you think wearing a suit designed to give the experience of having a medical condition can help make doctors more empathetic? What do you think your doctor could learn by “walking in your shoes”? Let us know in the comments.
Filed under: General Problems
3 years ago I was hospitalized for a week with an infected abscess from a cat scratch that had to be drained by a surgeon which ended up with a 4cm deep wound in my thigh. I had twice daily wet to dry saline dressing changes. I have spent most of my career in LTC in consulting. I have always advised nurses to be sure to give PRN pain meds prior and after dressing changes and Physical Therapy sessions. I received 10mg IV MSO4 prior to each change and it just took the edge off during the procedure…a few times I was about ready to send the poor nurse thru the ceiling because the area around it was so sensitive, just laying the gauze on the leg was painful. The dressing changes continued at home with oral pain medications for the month it took to heal enough that I then didn’t need anything more than Tylenol or Ibuprofen. After that incident, I have become a little more emphatic about pain management with procedures with my facility nurses. Yes, there is much to be said from the personal experience of being the patient when you are in healthcare. What is frightening now is how the new guidelines may affect the LTC industry in regards to pain management. Having to go through a dressing change or Physical Therapy without good, solid pain control IMHO should be considered torture and barbaric and I envision a clash between the Fed alphabets and the State Boards of Health who oversee compliance to the LTC rules and patient rights.
Of course it would help. Experience is the greatest of all teachers. Why does one think that all the homework and all the labs that one has to engage in in their K-12 and postsecondary University experience or trade school is required? Be cause one learns by doing, by experiencing. One cannot successfully ride a bike until one actually mounts up and crashes a few times. So if a physician is able to experience the debilitating effects of a disease to some degree, their ability to empathize and take the mindset of the patient seriously will be enhanced. It’s a no-brainer in my book.
I was diagnosed with Fibromyalgia Syndrome (FMS) twenty-two years ago. I had suffered from it for over three years previous to that. Finally in about 2013, I finally found a physician that understood and helped. I went 19 years with a few doc’s and a handful of half-baked treatment measures. The cost of that inadequate treatment has been almost incalculable. I reckon that if their were an FMS suit available, that kind of semi-apathetic treatment would be significantly diminished.