I hope you will enjoy reading the Advocate Spotlight below, in which one of our long-time team members talks about her lymphedema journey, why she got involved, and what advice she has for other advocates.
We also hope that reading her story will inspire you to deepen your involvement and join your state’s advocacy team. As a team member, you will receive additional information about your congressional offices and have access to special actions not available to the public. There is no cost and everything can be done from home.
Thank you for considering this opportunity!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
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LTA ADVOCATE SPOTLIGHT:
Interview with Linda Mele
from New Hampshire,
Team Member since 2019
I do not know for sure what caused or triggered my Lymphedema. When I was two years old, I was bruised on my right side in a car accident. Then, at the age of three, I developed a distinct red line infection in my thigh and was given penicillin. It recurred, and as I grew I had frequent infections. I assumed the red lines were in my lymph vessels. At the age of 11, I had a strangulated intestine and had a very difficult abdominal surgery that formed an abscess and my incision had to be opened up and drained. Later in my life, when I was going to a physical therapist for MLD, the connection was made that that surgery probably affected Lymph vessels and made my condition worse.
I heard about Lymphedema by the time I was 11. By that time, my entire leg became involved. I required and wore a heavy stocking as a teenager. Doctors shook their heads. I was told, “It’s the gravity we are fighting–keep your legs above the heart!” and started to use a lift for my leg during the night. Frequent infections impacted my life, with many hospitalizations. I’m 74 years old and ten years ago made it a goal to try and get fewer infections. I changed my compression from stockings to a Circ Aid garment with Velcro fasteners. They were easier to adjust during the day compared to the stockings that would sometimes crease my leg at the thigh and behind my knee.
I’ve always been very active, but always had to think of the impact my activities would have on my leg. I wanted to teach school, but had to pass a medical exam after getting the job. The doctor questioned the toll of standing and the rigors of teaching would have on “that leg”. I insisted that I would do what is necessary to keep my leg as healthy as possible. He, hesitantly, signed the form and let me try.
Because my leg was an issue, I started working part-time as a Title One remedial reading teacher. Later, I became a fourth-grade teacher, and I continued working full-time for 20 years. I had three children and a husband with a high-powered job. I did get a lot of infections, and even wore a PICC line to school for a stubborn infection.
For many years, I thought I was the only person that had one big leg. In the early 1980s, I was involved with a support group that scheduled speakers who gave us information that took the mystery out of my leg. Awareness and treatment options were discussed. I clearly remember the feeling of not being the only person with this condition. As part of the group, I was accepted to University Hospital in Massachusetts as part of the initial testing of the Lympha-Press. I met many lymphedema patients each with their own story, and felt the power of a group’s common goal.
What motivated you to become an Advocate for the LTA?
Prior to age 65, all my garments had been paid for by my excellent health insurance. Once I transitioned to Medicare, I was appalled to learn my compression was not covered. I have always been a problem solver and have always been involved with Lymphedema-related organizations. As an educator, I was teaching about how a bill became a law. More recently, I watched as Kathy Bates testified to Congress about lymphedema. She spoke so eloquently after only having the disease for three years. I had it for more than 60 years and I thought, “I should be speaking out about this.”
We are a citizenry government. Medicare laws were written back in the time when no one was aware of Lymphedema. I like truth, and I like to fix things. This oversight needs to be corrected. I also like that we are exposing the injustice of this situation. Being part of the solution is so rewarding.
I feel a great deal of empowerment whenever I can work with others with similar health conditions. In 2019, I and a few friends with Lymphedema as well as a therapist went to Senator Maggie Hassan’s office in New Hampshire. We met with her Health Legislative Aide. I felt empowered setting up the appointment and having that meeting. I was very happy when Senator Hassan became a co-sponsor.
What advice do you have for other advocates – especially our newer advocates?
Prepare your elevator speech so you know what to say at the drop of a hat. Be willing to listen, be patient, and communicate your messages clearly. Always lean into the fact that you are helping to correct an injustice and you are being part of the solution. We are all going to be on Medicare one day, so it’s smart to take the time now to get this problem fixed. Leverage your email contacts and use social media to encourage others to get involved.
I’m very surprised and frustrated by how long it takes for a bill to become law. The LTA has so many co-sponsors–more than any other healthcare bill–and yet the process has taken 11 years and we are still not across the finish line. I remain optimistic that together we will prevail in 2022 and I encourage all Lymphedema patients and our allies to join the fight today.
