I hope you will enjoy reading the Advocate Spotlight below, in which Melvin Osburn, one of our long-time team members, talks about his lymphedema journey, why he got involved, and what advice he has for other advocates.
We also hope that reading his story inspires you to share yours. Stories from patients, family members, friends, caregivers, and clinicians are so valuable in helping Congress to understand why passage of the Lymphedema Treatment is critically important.
Click here to submit your lymphedema story today. Suggestions on what to include are on the form. Have a safe and happy Memorial Day weekend and thank you for your advocacy!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
LTA ADVOCATE SPOTLIGHT: Interview with Melvin Osburn from Illinois, Team Member since 2014.
Where it all began… I was kicked by a horse in my upper left leg when I was eight years old. It caused an infection and I missed almost a full year of school. Around 1960, a gas tank blew up on me and burned both of my legs and I started having infections in my left leg. From 1960–1972, I had many infections in my left leg and was diagnosed with phlebitis. In 1977, I was in and out of the hospital for infections in both my legs for three months. At that time, I found a certain style of cowboy boots that helped to keep the swelling somewhat in control. After only two years, I could no longer get that style of boot and that’s when the real trouble started with my legs–they swelled up out of control and I had to have my clothes custom made.
Fast forward to 2006, I met a chiropractor and he asked if I wanted to know about “lymphedema.” I had never heard of that word. He put me in contact with a certified lymphedema therapist. I had manual lymphatic drainage with her for approximately five weeks. It took me until 2012 to realize I needed to do some things for myself. I recall being in the hospital with another infection in my legs when I was informed about a lymphedema support group. I thought I would check it out and attended a meeting. I was invited to help with a demo for a class of therapists who were in training to work with lymphedema patients.
Shortly after that, I contacted the therapist for an appointment and started therapy. She said, “I think I can help you get back into your boots.” I had treatment with her five days a week for 11 or 12 weeks. After the first two or three weeks of therapy, my swelling had come down and I was able to order a pair of custom boots. My therapist has been a big help.
What motivated you to become an Advocate for the LTA?
I got involved because I want to help other people. In 2014, I attended the Washington DC National Lymphedema Network Conference. The Lymphedema Treatment Act Lobby Days were held at the same time. I saw the advocacy work that needed to be done.
It’s heartbreaking that many people cannot afford the wraps and compression and as a result, we are wasting our Medicare dollars. If I could, I would make a trip to Washington DC and talk to the senators.
What advice do you have for other advocates – especially our newer advocates?
- Take good care of yourself–do your therapy and keep up with your maintenance.
- Tell your story and help where needed. Meet your U.S. Representative and your Senator and bring your photos. They are so powerful. I bring pictures of my legs and show them what lymphedema is–that’s how I got my Representative to sponsor the bill. I have pictures of my legs in 2012 before my therapy and in 2017 after treatment. The difference is staggering. I have not been shy about sharing my photos–they tell the story. Get involved—because you can make a difference.
- You can also get involved on the local level. Meet your state Representative. My state rep has a bill pending for Lymphedema Treatment in Illinois. One local opportunity I have taken advantage of is my state’s Lincoln Day dinner (the Lincoln Dinner is an annual celebration and fundraising event of many state and county organizations of the Republican Party in the United States.) It is an opportunity to eat and converse with elected officials. Watch where the meetings are being held and go talk to your elected officials.
Advocacy in Action!
Melvin Osburn is one of the LTA’s most active advocates. Over the past 10 years, Melvin has shared his story with literally anyone who would listen! Here’s a small snapshot of some of his actions to help create awareness and funding for the LTA:
- He has spoken to physical therapy students at St. Louis University, lymphedema therapists at hospitals and universities, college students at colleges and universities, representatives from Tactile Medical, a pneumatic pump manufacturer and more!
- Melvin went to Washington, DC three times for the LTA and he’s attended numerous political functions to speak on behalf of the LTA.
- He did a radio interview discussing lymphedema in kids and the LTA with Heather Ferguson, Executive Director of the Lymphedema Advocacy Group, and Dr. Julie Hanson, a pediatrician.
- Melvin got Congressman Rodney Davis to meet with the parents of a child who was born with lymphedema. The Congressman was able to assist the family with financial assistance for her medical needs.
- He hosted two lymphedema awareness meetings in his hometown of Jerseyville, Illinois. Melvin created innovative fundraisers for the LTA including a walk up the River Road in Alton, Illinois. And he received a major donation for the LTA from the Big Boy Donut Shop in his hometown of Jerseyville, Illinois.
