Why Health, Education and Welfare
Hi! My name is Jennifer Edmondson, and I live in Appleton, Wisconsin. I’d like to share with you how my horrifying experience with breast cancer and Lymphedema inspired me to start a nonprofit to help others.
I’d become an attorney because I like helping people. For many years, I’d wanted to start a nonprofit, but I didn’t know what its focus would be. Then, following some life-changing events, Health, Education & Welfare (HEW) was born. And we’ve made Wisconsin history.
A month before my 50th birthday, I was diagnosed with metastatic breast cancer. A routine annual mammogram detected cancer, and biopsy and MRI confirmed the cancer had spread to all the lymph nodes under my left arm. I was convinced I was going to die. I’d never see my daughter graduate from high school. Or enjoy retirement with my husband. Or ever walk our little fluffy rescue pup, Sammy.
I underwent double mastectomies, removal of all left axillary lymph nodes, followed by AC-T chemo, radiation, and prophylactic salpingo-oophorectomy surgery. Then I developed Lymphedema in my left arm.
A forced march, not a "journey".
Like many cancer patients, my chemotherapy side effects were horrible. It felt like I was being forced to march down a never-ending, rocky dirt road, and every time I’d fall, weak from exhaustion, I’d be pulled up and forced to continue.
During the first chemo treatment, my windpipe closed up and I couldn’t breathe. There was no alarm or call button. Luckily, a nurse who was emptying a garbage bin saw me flailing my arms. The massive doses of steroids that suppressed allergic reactions kept me wide awake for two to three consecutive nights after each chemo treatment.
I was sleep deprived. I didn’t feel like eating. I lost my sense of taste and smell. I had recurrent sinus infections and coughing fits with dry heaves. I had to have an Albuterol inhaler. I couldn’t walk more than a half block before becoming out of breath and fatigued. I lost all my hair. Though I had friends and family around me, I felt very much alone.
Trying to make sense of the pain and suffering – looking for signs.
In desperation, I prayed for signs to show me what was I supposed to do with this pain and suffering. To this day I’m still getting signs.
I started manual lymphatic drainage massage therapy, and wearing a compression arm-sleeve on my left arm. Lymphedema is an immune system disease. The lymphatic vessels don’t move the lymphatic fluid normally, so the fluid builds up and makes the body part swollen. The lymphatic fluid can become infected, resulting in cellulitis, which can cause permanent damage to the vessels, possibly leading to high fever, pain, hospitalizations, amputation or deadly sepsis. Lymphedema must be controlled on a daily basis.
First Sign. My certified Lymphedema therapist, Teresa Iattoni, and I discussed lots of topics during my hour-long manual lymphatic drainage massage sessions. Compression garments are an essential part of a comprehensive medical treatment plan for Lymphedema. My insurance didn’t cover mine, but I could afford them. I learned Medicare doesn’t provide any coverage. Health insurance doesn’t always provide adequate, or any coverage. Healthcare systems generally don’t provide financial assistance. Patients who can’t afford compression garments go without - putting them at greater risk of developing life-threatening complications.
Second Sign. Teresa’s dream was creating a Lymphedema conference for both healthcare professionals and patients. None existed. Mine was starting a nonprofit, but I didn’t feel ready to do that yet. I was on the board of a local foundation. We approached them. They agreed to handle everything - registration, volunteers, marketing, and catering. Teresa and I would secure the presenters and exhibitors. We set the date. We were on our way!
Third Sign. Three months later, the foundation advised they were dissolving, because the oncology practice that provided their staff and funding was closing down. Push had come to shove. It was time to start that nonprofit.
On April 12, 2018, Health, Education & Welfare was born. On November 17, 2018, HEW presented Wisconsin’s first and only Lymphedema conference for healthcare professionals and patients – Advances in Lymphedema Care Conference, providing direct access to nationally recognized Lymphedema experts, and manufacturers of Lymphedema products. Over 100 were in attendance. Teresa Iattoni remains our Conference Mastermind. We are blessed with talented and committed board members, supporters, and volunteers.
BrightLife Direct – Our Catalyst.
Health, Education & Welfare is a tiny, all-volunteer nonprofit. We work with local and national media, healthcare providers, individuals, businesses, and nonprofits. One very special supporter is BrightLife Direct, who has been with us from the very start. HEW created a special designation especially for BrightLife Direct – our Catalyst.
I’ve been a BrightLife Direct customer since 2011. I value their excellent customer service, and affordable prices. They were incredibly supportive of HEW from the very start. BrightLife Direct donated compression garments to help The Compression Garment Fund get started. They provided samples for patients, physical therapists and other healthcare professionals, and door prizes. BrightLife Direct’s unwavering encouragement provided a positive energy that has sustained HEW through challenging times. We look forward to continuing to partner with BrightLife Direct.
Wisconsin’s first and only.
Since 2019, HEW has provided over $6,000.00 worth of compression garments to people in need. This is due to the enthusiastic support and encouragement we have received from BrightLife Direct, and our wonderful supporters. We’re an all-volunteer nonprofit, and all proceeds go directly to making our programs and services possible. Our Advances in Lymphedema Care conferences, and Compression Garment Fund continue to be Wisconsin’s first and only.
We welcome and enjoy working with others! Come and check us out at https://hew-wisc.org/ to learn more about our innovative programs and services, and the wonderful people we help. Follow us on Facebook @HEWWISC1. And here’s the link to our NBC television interview about our Advances in Lymphedema Care conference.
We’d love to hear from you and get to know you!