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When Nicole Faccio was born, her left arm was already noticeably swollen.
“I probably gave heart attacks to a couple of people,” Faccio, 36, London-based project manager for a technology consulting firm, tells TODAY.com. Born with primary lymphedema in Puerto Rico in the 1980s, Faccio says her parents “immediately started looking for help.”
Lymphedema is a disorder affecting the lymphatic system, and March is Lymphedema Awareness Month.
Normally, the lymphatic system, which is part of the immune system, carries lymph fluid throughout the body. But, in people with lymphedema, that system isn’t working properly, so fluid collects and leads to swelling and other symptoms, the Mayo Clinic explains.
Without the help of Google and with much less known about the condition at the time, her parents eventually took her to Boston, where she was diagnosed with Milroy disease, a genetic disorder that affects the lymphatic system. (Faccio would later be diagnosed with WILD syndrome, a different rare genetic disorder that also causes lymphedema.)
Faccio’s lymphedema causes swelling in her arm, legs and genitals, and it causes lymphatic masses to develop in her abdomen. As she grew up, her symptoms started to interfere with her life more and more. She also started experiencing digestive issues, brain fog and extreme fatigue.
“In my mid-20s, it just took over my body and my well-being,” she says. But the doctors she saw weren’t knowledgeable enough to really help. “(They) looked at me like I had octopus arms, like I was a specimen,” she recalls.
Faccio’s “worst nightmare” became her “best friend.”
Eventually, Faccio says she felt like she was “getting to the end of my functional life,” and she didn’t know what to do.
She took a chance and traveled to specialized clinics in other countries. And getting that care turned out to be essential to her physical and mental well-being. In particular, the experts she saw helped her come to terms with the tools, like compression garments, she’d grown to loathe.
“In that process, there was this freedom and opening up and finding that these tools are not my enemies — they’re my best friends,” Faccio recalls. “And that’s when everything started changing.”
Although she’d been taught to use techniques like compression bandaging from an early age, doing so also came with feelings of guilt and shame, as well as the urge to isolate and hide her body. She felt like the garments invited strangers’ questions and made it harder for her to enjoy her life. So, she admits, she wasn’t as consistent about using those tools.
“I come from an island … Puerto Rico. The worst thing you could have told me is you have to cover your legs for the beach,” she says. “It was my worst nightmare, but now I do it.”
And she does it in style.
“I started challenging my own beliefs about the hiding,” she says. “What if I put short skirts on with garments? What if I show them? Maybe it actually is a fashion statement.”
She started wearing bright colors of compression garments rather than darker or flesh-toned colors designed for camouflage. And, knowing that she wanted to share her revelations with the rest of the community, she started posting photos and videos of herself putting the garments on and making them part of her outfits.
Faccio, who has more than 102,000 followers on TikTok and 31,000 followers on Instagram, won a 2023 award for her social media presence from Eurordis, a non-profit organization dedicated to improving life for people with rare diseases. She also hosts a podcast, Normal Adjustments, in which she speaks to guests about destigmatizing aspects of their lives, and recently wrote a blog post about her “brilliant basics” for managing lymphedema symptoms.
Her videos, which regularly get hundreds of thousands of views, educate her audience about what life is like with lymphedema and offer empathy, understanding and humor for those also dealing with the condition. She doesn’t shy away from the realities and negativity that can come with a visible chronic illness, she says, but she leads with positivity and simply aims to normalize her experience.
What causes lymphedema?
There are two main types of lymphedema, Erin Pinto, a nurse practitioner with the Jill and Mark Fishman Center for Lymphatic Disorders at Children’s Hospital of Philadelphia, tells TODAY.com.
People with primary lymphedema, like Faccio, are born with the condition due to a genetic mutation, while people with secondary or acquired lymphedema develop it as a result of something else, she explains.
“For example, patients who have breast cancer will get mastectomies and then develop a secondary arm lymphedema,” Pinto says, “perhaps because of the disruption to the lymphatic channels or removal of lymph nodes.”
In the beginning, for some people, “it’s insidious, and patients may not realize they have swelling,” Dr. Wei Chen, a professor of plastic surgery at the Cleveland Clinic who specializes in lymphedema microsurgery, tells TODAY.com. It may even go away overnight, because the person is positioned horizontally in bed, only to come back after they’ve been on their feet all day, he says.
But, from there, the swelling becomes more severe, and the patient can develop tissue fibrosis, a thickening of the skin that can limit their range of motion, Pinto explains.
So it’s important to recognize that lymphedema should not be dismissed as just “benign swelling,” Chen says. It can lead to serious complications, like bacterial skin infections in the affected area of the body.
“Lymphedema patients are considered regionally immunocompromised,” he adds, because they’re less able to fight off bacteria and infections in that limb. If a patient develops an infection like this, they often need to be admitted to the hospital to receive intravenous antibiotics, Pinto says.
“Many patients with lymphedema start to develop spontaneous infections, and with each episode of infection, they are predisposed to further infections,” which get progressively harder to treat, Chen says. “So it’s a vicious cycle.” Sometimes, patients may even need to stay on preventive doses of antibiotics.
Lymphedema treatment often requires a specialist.
Lymphedema is a chronic condition, but it can be effectively managed, Chen emphasizes. Patients may be discouraged if they hear that there’s no permanent cure for lymphedema, but he wants people to know that there are ways to reduce the symptoms and “live a productive life even with lymphedema.”
The goal for patients is managing their symptoms, maintaining a good quality of life and keeping them out of the hospital, Pinto says.
Treatment options typically start with non-surgical techniques, like compression bandaging and manual lymphatic drainage, which are part of an approach called complete decongestive therapy (CDT), she explains. Pneumatic pumps, which encourage drainage by simulating the muscular movements of the lymphatic system, are also an at-home option.
Some people may also be good candidates for surgical treatments, which can achieve results that no non-surgical option really can, Chen says. The right approach depends on the underlying cause of a patient’s lymphedema and the context of each unique case, he says.
The experts agree that the key to finding the right treatment plan is connecting people with lymphedema specialists. That includes certified lymphatic therapists or microsurgeons who can help confirm the diagnosis and give proper guidance for each individual patient.
What works for each person may be different because “lymphedemas have personalities of their own,” as Faccio puts it.
Unfortunately, finding that care is often a challenge.
“I’ve heard that from a lot of patients and families,” Pinto says. “There are very limited amounts of therapists who are certified specifically in CDT and who are able to fit for compression garments.”
Those compression garments can also be quite expensive with limited insurance coverage, she adds, and patients typically need to be fitted for them multiple times as the severity of their swelling changes.
Finding a qualified lymphedema surgeon can also be tough, Chen says, partly because of the extensive training required to perform microsurgeries and supermicrosurgeries like these. Poor insurance coverage for these procedures also disincentivizes many surgeons from pursuing this specialty and limits patient access, he adds.
Chen also encourages primary care doctors to better familiarize themselves with lymphedema and to not hesitate to get patients specialized care.
“Usually, patients are scared and feeling hopeless because they got the impression that health care providers have no idea what they’re talking about,” Chen says. “Frequently, patients feel that they know more about lymphedema than their doctors do.”
Better education in medical school will lead to earlier diagnoses and, ultimately, better care for patients, he adds.
Finding — and creating — a community that understands
When Faccio began to embrace the tools she used to manage lymphedema and saw how much better doing so made her feel, she thought it would be selfish to keep this knowledge to herself.
Even though multiple celebrities have been diagnosed with lymphedema, including Wendy Williams, Faccio says there still isn’t much public knowledge about what people with the condition look like or deal with “because most of us are hiding our legs or not wanting to acknowledge it.” And that’s where her accounts come in.
So far, the response has been “overwhelming,” she says. “It’s been wonderful, and it validates my assumption of the amount of help that was needed.” She gets questions from people all over the world, often about simple things, like where to get garments or how to keep skin from getting too dry.
And she’s grateful to be part of an online lymphedema community that helps each other — even from afar. “It’s been beautiful,” she says.
This article was originally published on TODAY.com
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