Until my 15-year-old daughter had unexplained swelling and hardening of her ankle last year, I hadn’t thought of or studied lymphedema since medical school. As a pediatrician I had not observed a case in my 16 years of practice/residency. Lymphedema was, in my mind, almost exclusively a disease of adults and often a complication of surgery or radiation for cancer. I was not alone in this thinking. Orthopedists, rheumatologists, radiologists, podiatrists, and my pediatric partners were all struggling to understand what was happening to my otherwise healthy teenager. For me the experience was surreal. Up until then I felt we had already skirted the major and often rare disorders I saw many of my patients suffering. The birth defects. The syndromes. The disabilities. I think that’s why it was such a shock that she in fact had lymphedema and had likely never been truly ‘normal’. No one could tell us why or how. No one could reverse it. No one could tell us how much worse it would get or if she could pass it on. Experts in primary lymphedema are more rare than the condition itself. The disorder was painful, disfiguring, progressive, irreversible, poorly understood, life altering, and dangerous.
Our search for the highest quality of care and expertise took us rather quickly out of the country to Germany. Although her condition was early and mild, we were determined to seek out aggressive phase 1 complete decongestive therapy (CDT) to try to reverse some of the fibrosis, which had already set in and prevent any progression. She was going to need that leg for another 80+ years. Why would we want to do any less? This type of daily ‘phase 1′ decongestion (especially for a thus far mild case) was not offered or readily available in the U.S. though arguably a thorough review of the medical literature suggested it should be the standard of care. For reasons that are very likely complicated we found the U.S. lacked dedicated lymphedema medical centers. In Europe there are any number of clinics and hospitals devoted solely to the treatment of lymphedema concentrating both therapists, researchers, and physicians alongside affected patients. In the United States her condition took 6 months, numerous referrals to specialists, and our ongoing insistence to diagnose. As many affected individuals know, 6 months is actually not bad. Sometimes its years if ever.
When she finally was diagnosed preliminarily, the physician had no idea where to send her for definitive treatment or expert evaluation. When we did find our own way to an expert we were instructed that her case was thus far mild, we were lucky, she should continue to wear an off the shelf garment and move along with her life. I understand there’s a certain wisdom in the approach, but her life was already altered dramatically in ways only a teenaged girl with lymphedema could really understand. Knowing the naturally progressive and degenerative nature of the disorder and knowing that the fibrotic changes build over time, this approach concerned us. The lack of ongoing coverage for therapy made no sense to us. The lack of dedicated facilities for the care of patients with lymphedema and the associated lack of experienced providers made no sense to us. In short, lymphedema care in the United States makes no sense to us! The first step in improving that care must begin with coverage for compression. Even if therapy were better covered for the first stage of CDT, and even if there were better facilities specifically for lymphedema, none of it matters if you can’t hold the improvements or prevent progression with a proper garment. That’s why I’m so happy to be a part of the LTA. It’s the first step.
