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New non-profit helps lymphedema patients

Posted at 10:42 PM, Oct 10, 2018
and last updated 2018-10-11 09:22:40-04

Two local women are joining forces to help people suffering from lymphedema. It's a chronic, disabling condition where the lymphatic system fails to drain fluid, cells and proteins away from tissues in the body. It causes fluid retention and excessive swelling in 5-10 million Americans. 

"It was a swelling that seemed very strange, and it felt like the skin was really being stretched to its limit. I knew something was wrong," said Jennifer Edmondson.

Edmondson was diagnosed with breast cancer eight years ago. 

"It was a very horrible, horrible time for me and my family."  

She beat the disease after a year-and-a-half of chemotherapy, radiation and surgery. While the treatments saved her life, they also caused lymphedema which is a common, secondary condition for many cancer survivors.

Edmondson began seeing Teresa Iattoni, a specialty certified lymphedema therapist at Advanced Physical Therapy & Sports Medicine in Grand Chute.

"It was during these sessions over the last number of years that we actually started talking about Teresa's dream," Edmondson explained, "and also my dream to start a non-profit." 

Now, their dreams are a reality. Edmondson recently launched her new non-profit called Health, Education & Welfare. The organization is establishing a fund to help patients pay for their compression garments.

"Our clients, especially with Medicare, have limited to no coverage for lymphedema garments, and garments can range in price from anywhere from $40 to $2,000," explained Iattoni.

"Without those garments, a lot of people will then be at higher risk for developing the cellulitis infection, possibly sepsis, which could result in amputation or death," added Edmondson.

The non-profit is also putting on the first-ever Advances in Lymphedema Care-Personal Empowerment 2018 conference next month. Patients will have the opportunity to meet compression garment manufacturers face-to-face.

"We'll have 14 exhibitors at the event and so they'll be able to touch and feel the products themselves," said Iattoni.

They'll also hear from an attorney about workers' rights, and a UW Health surgeon will serve as the keynote speaker.

"I think its just great that Dr. Michelotti is coming from Madison to talk about options. I don't think people know about options," said Nancy Copeland.

Copeland believes trading stories and tips with other lymphedema sufferers will also help with the emotional struggle.

"I think the support is really important."

Conference attendees will also learn about the benefits of yoga and Tai Chi.

"This is the first time lymphedema patients will be given a voice and a venue to come together and meet each other in a safe and welcoming environment," Edmondson said.

The conference is being held on Saturday, November 17th from 8:00am to 2:00pm at Fox Valley Technical College. The cost is $20 per person for those impacted by lymphedema and $40 for all others. Click here for more information.

Organizers will also present the inaugural Shellie Stellrecht Award for Excellence in Lymphedema Advocacy to a deserving recipient who has made a difference for others.