Knoxville has a support group for people dealing with an incurable condition called Lymphedema. It is a swelling in arms or legs from fluid build-up.
(WBIR-Bearden) This week is Lymphedema awareness week. If you don't know what it is you're not alone.
Lymphedema is a swelling from fluid build-up. It usually happens in an arm or a leg. Knoxville has a support group for people dealing with this incurable condition.
Saundra Kelley a professional story teller who shared her personal story with women who understand. It's a story of Lymphedema.
"Almost all the people I ever talk to do not know what Lymphedema is nor do they want to know. I mean it's frightening," Saundra Kelley said.
A blockage in the lymphatic system causes fluid to build up and that causes swelling. Saundra Kelley experienced swelling starting at age 13 but wasn't diagnosed until much later and then she had back surgery, which aggravated her condition.
"Swollen, swollen, swollen, bigger," she described what happened. "Then they pumped my leg with a pneumatic pump and pushed it up into the abdomen and the buttocks and surprise overnight you're a new woman but it's not the one you want to be."
The audience at the Bearden Library knows exactly what Saundra Kelley is describing because it is the Lymphedema Awareness Network of East Tennessee (LANET)
Becky Sharp is the chair of the organization. She is a breast cancer survivor who developed Lymphedema after radiation treatment.
"Actually it's had more impact on my day to day life than the breast cancer and the treatment because it's forever. But now that I have it under control I almost forget that I'm wearing the sleeve and the gauntlet," Becky Sharp said.
Lymphedema has no cure but you can treat the symptoms.
"You learn to do your own self lymphatic drainage. You do special exercises and you wear the compression garments to keep it from swelling," she said.
Physical Therapist Dianne Kerr said, "It's going to be a life long problem for most of these folks. They need to be educates about skin care, about exercise that's appropriate, about manual lymphatic drainage which is not really a massage technique but a gentle technique to stimulate the lymph nodes to work harder and also to be fitted with compression garments which will be necessary for most people to control their Lymphedema day in and day out."
The state of Tennessee made an official declaration. This week is Lymphedema Awareness Week. Members of LANET want Congress to get involved.
"We do want to be advocates for the Lymphedema Treatment Act so we're trying to get our representatives on board for that," Becky Sharp said.
Dianne Kerr said, "It's to try to force Medicare to cover the cost of garments. Medicare will cover the treatment for Lymphedema most of the time but it won't cover the cost of garments. Garments have to be replaced every four to six months and they're very expensive."
The women gathered at the support group have hope.
"New surgeries are coming out so maybe there is a cure down the road," Becky said.
Until then they'll continue to support each other and share their stories.