Chair, NC Chapter
My name is Kelly Bell. I am a veteran who served the people of this nation as a member of the US Coast Guard for over 25 years. I have battled lymphedema for over 14 years from an injury I sustained while serving and felt as though I was in this all on my own, until a little over two years ago I was introduced to LE&RN. LE&RN has introduced a network of others battling this disease and they have become more like a family. LE&RN has also provided me opportunities to visit with my state representatives, researchers at the VA, and members of the National Institutes of Health to share my story. In two years, I have gone from feeling lost and alone to having a voice and making a difference thanks to LE&RN.
After my wife retired, we began our next chapter in life and moved to North Carolina, a state that I realized did not have a LE&RN chapter. With over 10 million people in the US with lymphedema (LE) or lymphatic disorders (LD), I know there are others in this state who are struggling with LE and LD who need help, need a voice, want to make a difference, or just need to know they aren’t alone.
The LE&RN Chapters welcome people living with LE and LD, loved ones, clinicians, researchers, and anyone else interested in helping, and together we raise awareness in our community, build supportive networks, and hold events to support LE&RN’s research, education, and advocacy programs. Our stories can make a difference.
Helping LE&RN get the funding they need to improve treatments and find a cure is something I am truly passionate about.
Co-Chair, North Carolina Chapter
Shannon is a lipolymphedema patient advocate who developed it 18 years ago after having a miscarriage and a blood transfusion. After her diagnosis, she had to become her own advocate and research treatment options because her doctors were unaware of how to help her. Recently she has educated herself by reading, attending webinars, and talking with others that share the same journey as her own. To start, she looks forward to researching local resources and contributing to the LE&RN NC Chapter Treatment Centers webpage so patients can find therapists within their vicinity.
Shannon is also very passionate about teaching others about lipolymphedema. Namely that when lipedema progresses to lymphedema, it is called lipolymphedema and the importance of getting early treatment. She believes that knowledge is power, and patients will help educate medical professionals with their firsthand perspectives. Her goal is to remove the stigma surrounding lymphatic diseases while creating awareness to the many physical and psychological effects these diseases have on people.
Co-Chair, North Carolina Chapter
My name is Stephanie Roache and I am a NC native. I am a public school fine arts teacher and have taught K-12th grade general music, band, and visual art. In my free time I participate in aqua aerobics, do art projects, and take my puppy shopping.
I was diagnosed with lymphedema in 2018 after my second liver resection. My primary care doctor and my surgeon both dismissed my swelling as “normal postop inflammation.” After returning to physical therapy my therapist recognized the inflammation and had me assessed by a certified lymphedema therapist (CLT) who began treatment and got me fitted for garments and a pump. Unfortunately, I spent the next 3 years putting lymphedema on the back burner, not complying with treatment, and not realizing it was affecting my health negatively.
In March 2021, I discovered the lymphatic community and realized the importance of lymphedema treatment and what can happen when you neglect self care and treatment of the condition. Almost all of my struggles at the time were connected to my unmanaged lymphedema and I have spent the past year on a roller coaster trying to better understand lymphedema.
I am excited to have been connected with LE&RN to help bring awareness to this condition and the need for support, education, and more effective treatment options. Never forget that, as a patient, you must be your biggest advocate. If you feel like something isn’t quite right, ask questions and don’t be afraid to get a second opinion!