The September Lymphedema Patient Roundtable was a “back-to-school” session, with longtime patients and advocates sharing the most important lessons they’ve learned about living with and managing lymphedema.
Moderator Brenda Viola was joined by Karen Ashforth, MS, OTR, CLT-LANA, Catherine Rosenberg, Angela Jones and Tora Rocha for a candid conversation about building the right care team, becoming your own advocate, navigating misinformation and learning to listen to your body.
A major theme was the importance of a multidisciplinary approach. Catherine’s complex journey ultimately involved approximately 19 providers, along with mental health support and a trusted “second set of ears” at appointments. But the most important member of your care team is you, the patient. You know your body and your experience. Tora echoed the importance of finding knowledgeable clinicians, staying curious and building a supportive community.
There is also no one-size-fits-all approach to lymphedema. Compression, MLD, pneumatic compression, food choices and other treatments can affect people differently. The panel encouraged patients to introduce changes gradually, giving the body time to respond so it’s easier to identify what actually helps.
Angela captured the mindset beautifully: “The condition is the condition. I’m not the condition. I’m the manager of the condition.”
What works one day may need adjusting the next. Adapting is part of managing a chronic condition—not a sign of failure.
Angela encouraged patients to “become friends with your emotions.” Fear and desperation can make people particularly vulnerable to promises of quick fixes.
With increased awareness of the lymphatic system has also come an explosion of products and social-media claims. The panel urged patients to do their due diligence, particularly when something promises to “cure” lymphedema or offers compression that isn’t medical grade or properly fitted. If something sounds too good to be true, pause. Research it. Ask your clinical team.
Perhaps the most important lesson had nothing to do with treatment: Appreciate yourself.
A flare doesn’t mean you did something wrong. A difficult day doesn’t mean you failed. Catherine reminded viewers that courage sometimes means making peace with difficult circumstances, while Angela added: “Be kind to yourself. Be your friend.”
Instead of being at war with your body, appreciate all it continues to do for you. Love the legs that carry you toward the people you love.
Stay curious. Build your team. Advocate for yourself. Find your community. And above all, give yourself grace along the way.
SHOW NOTE: Portions of the video are frozen due to technical difficulties, but the audio content provides valuable insights for listeners.