Session Type: Poster Session C
Session Time: 9:00AM-11:00AM
Background/Purpose: I enjoyed being physically active my entire life – climbing mountains, hunting, and hiking. This drastically changed around 2012, when I noticed that I was increasingly experiencing shortness of breath and fatigue, despite being physically fit. I developed a nagging cough and my heart function decreased dramatically. I was tested for numerous conditions, but a diagnosis eluded me, and my health continued to deteriorate. Ironically, at the time, I was working as a respiratory therapist and was helping patients breathe, yet I could not breathe! I had to leave the career I was passionate about because my health became so poor. Eventually, my doctors ran out of potential diagnoses and began to discount my symptoms and brush me off. Meanwhile, my joints and tendons began to swell and become painful, my airways were collapsing, and I had to endure chemotherapeutic infusions to save my life.
Eventually, I was diagnosed with a rare autoimmune disease called relapsing polychondritis (“RP”), which is characterized by recurrent inflammation of cartilage in the body. RP is difficult to diagnose, challenging to treat and currently is not curable.
After trying to schedule an appointment at the National Institutes of Health (NIH) for quite some time, I had to postpone my visit because I became too sick to travel. Living in Montana, traveling to Bethesda, Maryland was overwhelming and simply not feasible – both physically and financially.
Thankfully, the RP Foundation and Race for RP established a fund to support the Friends of Patients at the NIH program (“Friends of Patients”) to offset travel costs and assist with providing for essential needs. The fund directly benefits RP patients and their families and advances RP research. Fortunately, I received assistance with transportation and made it to my appointments at the NIH! The clinicians and research scientists at the NIH identified several serious health conditions that could easily have cost me my life had they not been addressed, including cardiac amyloidosis, multiple pulmonary embolisms, and airways collapsing nearly 100%.
Currently, my medications are addressing the severe inflammation and heart condition caused by RP. High-dose corticosteroids have undoubtedly saved my life but have also resulted in significant damage to my body as well. Chimeric monoclonal antibody infusions also seem to manage my symptoms, and anticoagulant therapy reduces the risk of abnormal blood clot formation.
Quality of Life:
I am grateful for the medical treatments that saved my life, yet I continue to have numerous daily struggles that I have learned to live with. I experience brain fog and joint pain all the time, and my heart and lung functions are greatly impaired. I have compression fractures in my back. I developed Cushing’s disease and diabetes and gained eighty pounds due to high-dose corticosteroids. However, my health is not declining at the rapid pace that it was prior to visiting NIH. Despite the severity of my symptoms, I remain hopeful that researcher scientists will unlock the mysteries of my disease and prolong my life – and the lives of others. I cannot thank NIH, Friends of Patients, RP Foundation, and Race for RP enough!
To cite this abstract in AMA style:LaMere T, Linn M, Bammert D. My Multidisciplinary Healthcare Team and Patient Advocacy Groups Saved My Life [abstract]. Arthritis Rheumatol. 2020; 72 (suppl 10). https://acrabstracts.org/abstract/my-multidisciplinary-healthcare-team-and-patient-advocacy-groups-saved-my-life/. Accessed .
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