Healer Uses Social Outreach to Crowdfund Explant Surgery for Breast Implant Illness
An unknown number of patients will reportedly develop breast implant illness (BII), a constellation of chronic symptoms with a mysterious root cause associated with a negative response to breast implants.
However, breast implant illness isn’t the issue that prompted the U.S. Food and Drug Administration (FDA) to request a voluntary recall of manufacturer Allergan’s textured breast implants. The action was intended to protect patients from a different condition- breast implant-associated anaplastic lymphoma (BIA-ALCL).
Now, patients have become increasingly desperate to be free of their implants, but the current healthcare system doesn’t cover the exorbitant cost of implant-removal surgery. Many breast implant patients consequently take matters into their own hands through crowdfunding sites like GoFundMe.
‘I feel like I’m slowly dying’
Late last year, Daniela Sage started experiencing paralyzing pain in her breasts.
The 28-year-old has had silicone implants since 2011, and in recent years, she noticed changes in her body. Her joints ached, she felt chronically tired, and she suffered migraines, hair loss and blurred eyesight.
Sage believes she has breast implant illness.
Though the symptoms mirror those reported by other women, BII is understudied and little understood.
Researchers in the Journal of American Society of Plastic Surgeons called breast implant illness a “challenging issue,” requiring more research and scientific evaluation to better understand how the condition affects people with implants.
Sage, holistic wellness coach based in Miami, Florida, said she no longer felt like the vibrant, energetic individual she once was because of her implant-related illness.
“There have been days when I’ve said it out loud: I feel like I’m slowly dying,” she acknowledged.
When two good friends saw how sick Sage had become, they urged her to start a GoFundMe campaign to pay for immediate implant removal. She wrote on her page about the devastating symptoms of breast implant illness, and the contributions began pouring in.
“In order for me to regain a normal and healthy life, I have no choice but to undergo this surgery or else my health will continue to decline even more, and just the thought alone has me absolutely scared,” Sage wrote on the GoFundMe fundraiser.
Rising Reports of Implant-Related Cancer
In the last year alone, women have filed hundreds of reports to the FDA saying their textured implants led to anaplastic lymphoma, a type of non-Hodgkin’s lymphoma that can be fatal.
The number of reports of implant-related anaplastic lymphoma, or BIA-ALCL, jumped 46 percent between 2017 and 2018 and included 457 doctor-confirmed cases and nine patient deaths attributed to BIA-ALCL, per the FDA’s latest figures.
The possible extent of the problem of BIA-ALCL remains unknown because no one tracks the number of Americans with breast implants. We do know more than a half-million breast implants are used every year, and of those 70,000 are textured, according to estimates from the American Society of Plastic Surgeons (ASPS).
It’s worth noting ASPS appears to undercount the problem of implant-related lymphoma compared to the FDA’s accounting of adverse events. ASPS recognizes only 282 BIA-ALCL cases in the U.S., according to estimates as of May 14, 2019. The FDA updated its estimates after the March 2019 meeting on breast implants, where Madris Tomes, CEO of Device Events, presented an organized data set.
Implants in general, not just the textured form, are also linked to breast implant illness — and have been since the ‘90s.
The journey to diagnosis, treatment, and removal in those affected, however, will remain difficult and expensive until the medical industry recognizes BII as a real illness, according to advocates.
How did we get here?
Crowdfunding medical expenses
The average American household spends one-fifth of their income on health care. So it’s no surprise 28 million Americans go without, either because their employer doesn’t provide it or they can’t afford it on their own, the Financial Times reported.
Crowdfunding to shoulder the burden of health-care bills has become a widespread practice, and it’s particularly common for people with breast implants, who face extensive and costly removal surgery.
Sage said her doctor will remove both implants and the surrounding scar tissue in a procedure called an en-bloc total capsulectomy. The procedure aims to rid her body of all of the unhealthy tissue that’s formed around the implants. It amounts to $9,350 in medical costs.
“I simply do not have the funds at the moment and neither does my family,” Sage wrote on the GoFundMe fundraiser page. “These overwhelming emotions are what led me to create this GoFundMe page, in hopes of helping me manifest my surgery in June with your help and donations.”
Campaigns to cover medical expenses account for about a third of all money raised on GoFundMe, although it’s unclear how many fundraisers are for explant surgery like Sage’s, or related to breast implant illness. Sage’s campaign has raised $7,526.95 in contributions both on the platform and off since she launched the fundraiser. Although she has health insurance, she’s paying for the surgery out-of-pocket.
While breast implant illness isn’t currently recognized as a diagnosable medical condition that health insurance will cover, this may change soon.
The FDA is now researching breast implant illness, which is a significant milestone for women with the condition, said Maria Gmitro, an advocate who spoke at an FDA hearing in March on breast implants. The agency is also asking for people to report BII, including the brand name of their implant, implant maker and details of the adverse event.
Drawing inspiration from shared experiences
Upwards of 4,500 women have had their breast implants removed to treat breast implant illness since 2015, as MedTruth reported. One study found that 75 percent of patients had their silicone breast implants removed enjoyed significant changes in their health.
As Sage waited for her surgery date, she took vitamins and supplements to improve her health. She also avoided foods containing trace amounts of copper after learning she now has copper toxicity.
Throughout her ordeal, Sage said she’s found solace in knowing she’s not alone. She’s drawn inspiration from hearing about other women’s experiences with breast implants, including a woman who shared how her health had rebounded after explant surgery.
“There are thousands of women going through this,” she said. “If you’re open about it and you talk about it, and you share it on your social media, you could be saving another woman’s life. That’s the most important thing — that human connection.”
Sage underwent surgery on June 14, 2019. During the nearly four-hour procedure, her surgeon removed two intact capsules and excess scar tissue that had formed around her lymph nodes.
If she’d delayed her surgery any longer, Sage believes her condition could have potentially progressed to lymphoma.
She’s already noticed an improvement in her health, although she’s still recovering. The daily migraines? Gone. Plus, her energy is gradually returning.
“Overall, I just feel a lot more clarity,” she said. “People close to me told me right away I look so much lighter and happier.”
Sage hopes to encourage and inspire women who feel daunted by either the cost of explant surgery, or the fear they’ll look like less of a woman without breast implants.
“So many women have reached out to me saying they’ve experienced the same symptoms and they’re inspired now to get them out to,” she noted. She urges them to not be afraid and to explore their options.
In fact, three of her friends followed her example in recent weeks and had their implants removed. For them, and for Sage, the explant surgery has been about health empowerment.
“We’re putting our health first,” Sage said.
FDA officials are asking for patients with symptoms of breast implant illness to report adverse events here.
Nicole Knight is a freelance writer based in Southern California. A former reporter for the Orange County Register, she most recently covered issues related to women’s health and economic justice for the nonprofit site Rewire.News. Her bylines have appeared in outlets ranging from Pacific Standard to Parents.com, reflecting her varied interests. She is a member of the Association of Health Care Journalists and the American Society of Journalists and Authors. Follow her on Twitter @nicolekshine.
Originally published at https://medtruth.com on July 25, 2019.