Since 1964, researchers have been examining the connection between breast implants and autoimmune diseases. However, women continue to suffer from breast implant illness, also known as breast implant disease (BII), with no warnings to protect them from the disease and no treatments for the debilitating ailments.

In the Journal of American Society of Plastic Surgeons, researchers discuss how BII is a “challenging issue.” Ongoing studies and scientific evaluation are still necessary to better understand the illness.

According to researchers, there is a “variability and a broad range of symptoms, the lack of clear diagnostic criteria, the absence of long-term safety and efficacy data, and the need for better understanding of the interaction between host and implant cloud the picture.”

Recognizing Breast Implant Illness

Knowledge of breast implant illness begins on a grassroots level, with Facebook groups paving the way in helping patients recognize and understand the disease.

Sia Cooper, like many others, was not familiar with the side effects of silicone implants. Cooper, a nurse and personal trainer certified by the National Academy of Sports Medicine, didn’t realize that breast implants were causing her illness until she connected with other women who shared her symptoms.

Cooper discovered Healing Breast Implant Illness, a Facebook group with over 70,000 women. Finding the online support group helped her to realize she wasn’t alone.

“It wasn’t until I started doing research and finding other women with silicone implants who were dealing with the exact same symptoms that the dots started connecting,” Cooper said.

Symptoms of Breast Implant Illness

In the initial stages of breast implant illness, problems under the muscle occur first. The breast will harden due to the immune system fighting internal wounds, which created scar tissue. Pain spreads to the chest, upper back and neck. Exercise, which can cause silicone debris to spread throughout the body, can worsen the symptoms.

Cooper explains that she began noticing changes in her health after two years of getting her breast augmentation.

“At 7 years post-op, I was nearly bedridden sleeping for up to 14 hours a day, requiring daily naps, due to debilitating fatigue,” Cooper said. “Fatigue was the first sign and possibly the worst one I had to deal with.”

“Other symptoms included chest pains, joint swelling, muscle weakness, hair loss, dry skin, rashes, and worsening anxiety/depression,” Cooper said.

Many patients with breast implant illness suffer from autoimmune symptoms, fatigue, fever, numbness and joint pain. For women who have a family history of autoimmune disease, BII may be more common. Additionally, the urge to empty the bladder is a more severe form of BII.

Breast Implant Removal and Treatment

Since 2015, more than 4,500 women have had their breast implants removed to treat breast implant illness. According to a study, 75 percent of patients had their silicone breast implants removed and found significant changes.

“Within the first two weeks after my explant, most of my symptoms were either improved or gone,” Cooper said. “It’s seemingly good news that patients can remove the implant and symptoms disappear.”

In order to prevent BII, closely monitoring breasts is advised. Notifying your surgeon right away is imperative if there are any changes in health or breasts.

Regulating Breast Implant Illness

Previously, the World Health Organization found a link between breast implants and a type of cancer called breast implant-associated anaplastic large cell lymphoma, particularly linked to textured breast implants. However, the FDA concluded there is no obvious association that breast implants and chronic diseases are linked.

Diana Zuckerman, president of the National Center for Health Research, said, “The studies at that time were not very good and did not have the statistical power to determine rare diseases.”

On March 25th, FDA began a committee meeting where safety concerns of breast implants were discussed over two days. The press announcement concluded that manufacturers will be required to conduct “post-approval studies to further evaluate the safety and effectiveness of the products.”

An estimated 100,000 women implants after a mastectomy, and approximately 400,000 women having breast implant surgery every year. Breast implant illness is a huge concern not only because it puts women at risk of lymphatic cancer, but it also could trigger cancer a second time.

Cooper said she feels failed as a “patient and as a woman,” requesting that the agency better regulate breast implants.

“A major weakness of most breast implant studies funded by implant manufacturers and plastic surgeons is that they only evaluated diagnosed diseases rather than symptoms,” according to the National Center for Health Research. “Therefore, it’s important for patients to speak out, and for doctors to listen, in order for any change to occur on a larger level.”

Contact the FDA directly by listing symptoms at 1-800-FDA-1088 or online at MedWatch in order to inform regulation and public knowledge of BII.