My experience as an African American advocate
Race and/or ethnicity are very touchy subjects, even when discussing and dealing with health issues. In many cases, especially those concerning people of color and other minority groups, there’s a difference in the quality of treatment received. There could be a variety of reasons this occurs: lack of access to care, lack of insurance, lack of overall knowledge about the condition, and/or limited finances. Oppressed groups of people have higher rates of chronic diseases: diabetes, heart disease and cancer. As an African American and a woman, this is a double whammy for me.
When I was diagnosed with Lymphedema, I was given very little information. No one in my family had ever heard of the disease. Until me. It was difficult. I was a young woman, born and raised in the city, working two jobs and taking classes at the local college. It was, for lack of better words, overwhelming. Mentally, it was easier for me to not deal with it; not think about it. I was told there was no cure and nothing could be done about it.
Access to Care
The swelling came so suddenly my family and I didn’t have a chance to process what was happening. I was rushed to the nearest hospital by ambulance. At that time, I had insurance through my mother’s employer.
I stayed at the hospital overnight. The medical team ran tests and did multiple screenings. The results were unremarkable, outside of the swelling. As they prepared to discharge me, I was advised to schedule a follow-up appointment with my PCP. My primary care provider had very little answers for the swelling. Lab tests were fine; radiology scans were fine. I was prescribed fluid pills, told to limit my salt intake and to elevate my legs as often as possible. It wasn’t for another year or two that I was informed I had Lymphedema. My PCP didn’t have any therapists or providers that specialized in the disease available at the facility. After demanding more information and other forms of care, I was referred to another hospital for additional testing.
It was a long road, complete with a full body scan, testing, and a number of providers, but I soon learned that each Lymphedema provider has a different method of caring for their patients. Some focused on massage, some wrapped differently, and others only used the pneumatic pumps.
Lack of Education and/or Limited Resources
From the time that I was first misdiagnosed, then appropriately diagnosed, my health had started to affect me more. I could no longer ignore my leg. The swelling had become more significant and uncontrolled.
During my Lymphedema journey, I started getting more and more cellulitis infections. None of my providers informed me it was due to not wearing proper compression garments. I went weeks, sometimes months, without wearing them. Little did I know, due to the lack of information provided to me, that compression garments are so vital to people with Lymphedema that it could save their life.
My Journey to Advocacy
During several sessions with my occupational therapist, Mara Levy, she and I discussed the reasons some patients may not get appropriate treatment for Lymphedema. We discussed non-usage of compression garments, financial obstacles patients face to pay for compression garments, non-existent outreach programs, lack of knowledge, and the possibility that people are not being properly diagnosed. My occupational therapist told me about the Lymphedema Treatment Act, a federal bill that aims to improve insurance coverage for the medically necessary and doctor prescribed compression supplies that patients need.
I had no idea that something so necessary was not covered by insurance. Compression garments are known to improve the quality of life of Lymphedema patients; they help them walk better, feel better, and stay healthier. Why would it not be covered? Coverage is available for manual lymph drainage, massage therapy and wrappings, but not for the compression garments needed to maintain and control swelling. This simply did not make sense to me.
According to the Lymphedema Treatment Act (H.R.3877), untreated or inadequately treated lymphedema is progressive, leading to complications, comorbidities, loss of function, disability and in some cases even death. Compression therapy is the time-proven cornerstone of lymphedema treatment, without which patients cannot maintain their condition. Coverage for compression will enable patients to effectively manage this disease, thereby greatly improving their overall health and quality of life.
Once I was given the information about advocating for the Lymphedema Treatment Act, I was immediately on board to help in any way possible.
Faith Without Works is Dead
The absence of good works means that faith is dead and fruitless. Therefore, good works are the fruits of faith and the evidence of its presence, and with such faith is perfected. (James 2:26).
When I started talking about advocacy and getting involved, I was met with many different views. I was told, “Black people don’t do stuff like that…” “You’re going to do advocacy?” came my way riddled with laughter. Being an advocate is a real job but certainly was not viewed as such by the people I encountered.
My response to those in doubt was, “Well, I’m Black and I’m going to participate, advocate, walk and run (if possible).” Lymphedema affects me personally. Although I’m insured, it doesn’t make the issues of those in my community who don’t have insurance just go away. My insurance covers two compression garments every six months. The custom garment that I wear is about $500.00. My sleep garment is over $1000.00. Some people who are affected with Lymphedema can’t walk, can’t stand, and can’t fly. Some are bedridden and can’t work. To be able to advocate on their behalf is an honor to me.
Race and ethnicity aside, there is no difference between any other Lymphedema patient and myself. Disease has no color; it affects us all. When it comes to health and wellness, we all need representation. Lymphedema has no age or color. It affects everyone both old and young alike.
According to the Lymphatic Education & Research Network, up to 10 million Americans and an estimated 250 million worldwide suffer from lower extremity and related lymphatic diseases. This includes up to 30% of breast cancer survivors, children born with lymphatic diseases, veterans who have suffered physical trauma, and tens of millions living with filariasis. Currently, there are no cures and few treatments for these diseases.
Advocacy is very important. It gives a voice to the voiceless. Advocacy gives a voice to people directly affected by a disease—a child, a spouse, a mother, a father, an aunt, an uncle, cousins, and grandparents. Advocacy sheds a light to a condition or disease that many people have never heard of.
Advocacy has been educational, enlightening and therapeutic. Before I started my journey I did not know how many people Lymphedema affects. I believed Lymphedema was an unknown, rare disease that happened to only me. I had many questions. Why was my Lymphatic system damaged? Why didn’t anybody else in my family have Lymphedema? Who would actually understand what I was going through?
I read more. I researched more. I learned more. Today, there is much more information on Lymphedema than before, but there is still no cure.
It inspired me to start my own nonprofit organization Keep it Movin’ DC to help Lymphies with wrapping supplies and compression garments, and to encourage those with Lymphedema to take control of their health by being active, focus on self-care, and continuing to live life. My goal is to be a voice for both the Lymphedema community and the African-American community who may have a lack of outreach resources on the disease. I am by far a healthcare expert; but I am a patient Advocate for Lymphedema. Follow my Lymphedema journey at www.keepitmovindc.com.
At any given time, our health can be comprised and the effects of it can be devastating to us and our loved ones. Working together for a common goal will help us all. Our differences are what make us unique.
Health is Wealth. Be A Voice. Advocate.
