Meet Brylan Williams: She has long, flowing, golden-blonde hair and bright blue eyes. Her mom, Brittany Williams, has dressed her up in a beautiful, floral-printed dress.
She looks like your typical 4-year-old girl, full of life, bouncing around the room, her smile beaming, although her mother says, “But she’s also like a little tomboy.”
“She loves dress up and getting her dresses, but she loves to do whatever her brothers are doing. She’s very active. She’s able to do everything.”
But beneath that energy and joyfulness is a terrible reality: Brylan is fighting lymphedema, a rare disease with no cure in sight.
“It’s just such a mysterious disease. People don’t know about it, or they see it and they don’t know that that’s what it is,” Williams said.
Lymphedema victims suffer from loss of limb function and movement restriction and have an increased risk of infection. according to Fadi Shamoun, assistant professor of medicine and vascular medicine with the Division of Cardiovascular Diseases at Mayo Clinic
Brylan has secondary lymphedema, which develops after injury to the lymph vessels by surgery, trauma or secondary to cancer, she said, adding that the disease affects one in 100,000 children and afflicts about 100 million people around the world.
It wasn’t until Brylan was a month old that her pediatrician noticed her feet looked swollen. Her parents proceeded with genetic testing, countless exams and flew across the country, visiting with eight doctors and specialists.
Ten months later, physicians at Boston Children’s Hospital diagnosed the baby with lymphedema in her legs. Because lymphedema is a lifelong, progressive disease, Brylan must wear a compression garment on her right leg for the rest of her life.
According to Shamoun, medical treatment of lymphedema includes compression wraps, manual lymph drainage and lymphatic compression pumps.
Diuretics may help to reduce the swelling in early stages of lymphedema, he said.
As far as surgical treatment of lymphedema goes, it can include a lympho-venous bypass or lymph-to-vein bypass surgery, which “connects tiny lymph vessels to tiny veins to create a detour, around the part of the lymph system that is not working well,” Shamoun said.
Or, patients may undergo a lymph node transfer, where the surgeon takes a wedge of tissue that contains lymph nodes from a healthy area and transplants it to the affected limb, according to Shamoun.
Brylan didn’t have any surgical treatments, but the frequency and cost of her compression garments proved to be another obstacle for Williams.
Not only must they be replaced every six months, but they cost about $500 each — which Williams’ health insurance initially refused to cover.
“We got her fitted, and then the insurance battle began and we got denied, denied, denied,” Williams said. “So, it took about two months for us to finally get insurance just to come back and say, ‘Okay, we’ll pay for small amount of it.’ And I’m like, really? By that time, she had had a growth spurt because she’s a baby, and we had to go through the whole process over again because she needs custom garments, so they have to be fitted every time you order.”
While the cost of treatment varies, Shamoun said the baseline annual total cost per patient is a little over $62,000.
Costly treatments aside, the lack of awareness of the disease in the medical profession infuriated Williams.
“There is more awareness for adults for cancer treatment. There’s even more of lack of awareness for pediatrics,” Williams said. “No one could tell me what was wrong with my child, and there shouldn’t be such a struggle to get my child treatment.”
Shamoun sympathized with that complaint, citing “underprepared physicians, a lack of effective treatment and a lack of research and funding for research in this field compared to other vascular diseases.
Williams didn’t let this stop her.
Instead, she took action and founded her own nonprofit in May called Brylan’s Feat Foundation, which serves as a financial, educational and emotional resource for children with lymphedema who are in need of necessary treatment.
“The foundation has been a total grassroots effort,” Williams said. “I’ve done everything myself, as much of a struggle as that has been.”
In the short amount of time since Brylan’s Feat Foundation’s inception, Williams is already helping three children around the world.
They include Cora, who suffers from primary lymphedema in both arms, hands and her entire lower body; Tristan, a Canadian girl who suffers from primary lymphedema in her left hand, left arm, left leg and right foot; and Ritej, who has lymphedema in both legs and feet and lives in Tunisia.
For Cora, Williams transferred funds directly to a clinic in Germany. Tristan is in France for a third surgery. As for Ritej, “I sent her compression wraps and all that stuff to Tunisia over a month ago,” Williams said.
As Williams continues to spread awareness within the lymphedema community, the list of children who need help grows.
“I’ve actually gotten several families reach out and say, ‘Hey, we have lymphedema, we have no help, our doctor doesn’t know what to do. Can you help us?’ That alone is worth its weight in gold to me because I just want to make sure that every kid is able to get treatment. I don’t think finances should be a reason for why they can’t get treatment,” Williams said.
Williams said she also is concerned about the possible psychological and body-shaming that could confront her daughter and other children diagnosed with lymphedema.
“That scares me, especially with social media,” Williams said. “I think if I can spread awareness and put it out there, there will hopefully be a little more social acceptance of people looking differently, that it’s not their fault they were born this way, and it is what it is, and they’re doing their best to manage it, and you treat it — you know, live their best life.”
In addition to the foundation, Williams recently flew to Washington D.C. to advocate for and support the passing of the Lymphedema Treatment Act.
Currently, Medicare and many other health care policies do not cover doctor-prescribed compression supplies — a critical component of lymphedema treatment. The Lymphedema Treatment Act aims to change that.
“I was there for two days, and we were able to get eight new co-sponsors, and I was able to represent Indiana and Arizona,” Williams said.
Increasing awareness is what’s most important to Williams so that people will know that lymphedema is not a one-size-fits-all disease — and that she, Brylan and the Brylan Feat Foundation is there for them.
“I want to be able to help these kids as long as they need.”