By: Tiffany Howe, Hampton, VA
My name is Tiffany Howe, and I’m a 34 year-old single mom. I was born with primary congenital lymphedema. Primary congenital lymphedema first appears at birth; other forms of primary lymphedema may have onset later in childhood, during puberty or at any time throughout life. It is a very progressive and deforming condition, causing both physical and psychological detriment to my quality of life.
In July 1998, prior to my diagnosis and in an attempt to treat the excessive swelling of the left leg, doctors at Portsmouth Naval Hospital in Portsmouth, Virginia, performed liposuction (twice in two weeks). This made the condition worse and caused further damage to my leg. Later that year, after 19 years of being misdiagnosed, I was finally diagnosed with primary lymphedema. In January 2005, I spent two weeks on bed-rest due to infection. I was unable to walk because of the pain and spent one or more days at the hospital every week due to the infection. At that time, I had to give up my career as a psychiatric nurse (RN) due to my inability to stand or walk for extended periods of time. Then, after 27 years of struggling with this aliment, I had to choose between losing my left leg and undergoing the Charles Debulking procedure. This surgery took 12 hours and included grafting my left leg from the knee to the ankle. As a result, I have permanent nerve damage from the knee to the foot and increased scar tissue, which caused more lymphatic damage to the leg. This may not have been the best decision, but at the time it was a matter of life or death.
In November 2007, I traveled to the Norton Clinic in Long Branch, New Jersey, for consultation. They recommended I stay there for four to six weeks to have treatments which consisted of 1 ½ hours of daily Manual Lymph Drainage (MLD) sessions. These sessions cost $300 each, and the total would range from $6,000 to $9,000 (not including garments)—none of which was covered by insurance. Due to the expense, I was not able to go this route. In March 2010, I was able to receive MLD treatments here in Virginia. My total charges were $7,838.95; insurance only paid half, and I only recently was able to finally finish paying the balance. In January of this year, I was once again hospitalized for an infection in the left foot, which led me to again seek Manual Lymph Drainage. Although Medicare is supposed to cover these medical treatments, getting proper care is a constant battle. Medicare will pay for Manual Lymph Drainage, but will not cover bandages and garments. MLD and bandages/garments go hand-in-hand in maintaining this disease. Aside from paying $500 in co-payments, I am still waiting see if Medicare will pay for my garments. Normally they will not, because they are considered maintenance items, but since I was hospitalized with an infection, I hope they will cover the needed garments.
As a Lymphedema patient, I have educated myself by studying and researching how to manage and care for lymphedema. My nursing degree helps me with my research, which brought me to the realization that there is a need for support for lymphedema patients. I have a desire to help others navigate their way to better treatment from doctors and better health coverage from insurance companies. I met Heather Ferguson, Executive Director of the Lymphedema Advocacy Board, and she directs this board in efforts to pass the Lymphedema Treatment Act. While in Washington, D.C., lobbying for the Act, I formed a partnership with Heather and her board to lobby for this bill. I was later invited to become a board member and accepted as a continued effort to help get this bill passed. Soon after, I created a lymphedema support group called L.E.A.P. (Lymphedema, Education, and Advocacy Program). L.E.A.P.’s purpose is to help inspire, build self-confidence and assist those living with lymphedema.
With my lymphedema condition, I have had many physically and mentally stressful changes in my life. I now understand that regardless of my condition or situation, my life is still beautiful! One thing that motives me is to know that I can use my testimony to help someone else triumph. Despite the negativity, depression, worries, tears, loneliness and fears, I believe that my advocacy will help bring a positive outlook and change to the lives of lymphedema patients.
leap [dot] director [at] gmail [dot] com