Those readers who are following our Vectra Voice regularly know that we are in the middle of a series sharing what happened during our Patient Ambassador meeting in Tampa. In our last post, we highlighted what Kelly Young, the RA Warrior, shared with our Ambassadors at the meeting. Read below for a continuation of her session.
Kelly Young, known as the RA Warrior because of her blog, the Rheumatoid Arthritis Warrior, also founded the Rheumatoid Patient Foundation to raise awareness of RA and to support, educate and advocate for RA patients. A large part of Kelly’s journey has involved battling misperceptions about RA as a way of helping RA patients advocate for what they need. Her light-hearted talk first focused on some serious misperceptions RA patients often encounter. She also spoke about the concept of “discordance,” a misalignment of what RA patients experience and how their condition may be viewed by their physicians or others in their lives. Here are some of the reasons she said that can happen:
· Lack of understanding. It’s sometimes hard for people without RA to understand just exactly how disabling the condition can be. Kelly relayed how she decided not to take her anti-inflammatories one day last year when she had a doctor’s appointment because she wanted her doctor to recognize its full intensity—a point that resonated with our Ambassadors, many of whom have done the same. When Kelly showed up for her appointment, her physician took a look at her and immediately called an ambulance!
· Pre-set mental symptom images. Kelly attributes some discordance to the fact that many people are really only looking for symptoms of late-stage RA, which may be more familiar from images of RA they have seen. Not everyone realizes that earlier on in the disease progression, symptoms might appear differently and may not appear to be as severe.
· Not accounting for consequences of activity. Patient questionnaires may ask about walking up five steps or other activities, but in isolation. They fail to identify how RA patients often have increased difficulty after these activities that would make further activity more difficult. People experience a “recovery period” after activity that makes it more difficult to do other things they need to do—like walk back down those stairs. Patients sometimes call this “pay to play.”
· Not accounting for accommodation. As a corollary to being asked about symptoms, Kelly spoke about the resilience of RA patients and how they learn to accommodate the physical realities of their lives, which may not be reflected in a symptom questionnaire. For example, if asked whether they are able to wash their own hair, an RA patient might truthfully respond “yes,” without accounting for having equipped their hair-washing area with special modifications—or having cut their hair shorter— so that they are able to do so. In 2013, the RPF presented a poster at the American College of Rheumatology meeting concluding that patient responses on a health assessment questionnaire may reflect a higher health-related quality-of-life score than patients actually experience.
· RA not beginning in a “textbook” way. Doctors are often taught that RA starts with a soft, red swelling on the knuckle joints. While that can be the start of RA for some patients, others may experience symptoms in other parts of their bodies – their feet, shoulders, hands, hips, eyes, neck or spine, just to name a few!
· Being hard to classify. RA doesn’t have stages, or meaningful classes, like cancer or lupus. The disease is categorized as low, moderate or severe, and most patients fall into a broad “moderate” category that may not account for chronic, persistent RA. Kelly said greater research funding is needed for such basic disease research.
· Confusing response to therapy. When RA therapies receive approval, they don’t consistently show the same response rate for all patients. Typically, one-third of patients do well on the treatment, one-third don’t respond to the treatment and the remaining third fall somewhere in between, in terms of response. RA is an auto-immune disease, and not every patient has the same immune fingerprint; nor does one patient’s immune system stay static throughout their life.
Kelly ended her talk by sharing a dream she had first conceived with her daughter years ago to make people aware of RA by putting up billboards all around. This year in February, that dream became reality when the RFP presented the first-ever billboards for rheumatoid disease awareness featuring real patients – more than 200 billboards in 30 states!
Ambassadors then received a copy of Kelly’s book, Rheumatoid Arthritis Unmasked, which she signed as her RA allowed. By the time she was done, Kelly had made so many more friends. Our Ambassadors felt so connected and so validated by her description of what so many of them had experienced.
“Every day can be a battle to stay positive when you have chronic pain,” said LaRita.“Kelly’s presentation included some great info about current research. New research means hope for all us living with RA, and even greater hope for my young daughter and others like her who were diagnosed with RA as teenagers.”