June 22, 2015
Hidradenitis suppurativa (HS) is a disease that affects sweat glands in the groin and armpit, known as the apocrine glands, with symptoms that include painful red bumps or sores in the armpits, groin, anal areas; under the breasts, for women; pus drainage; itching; foul odor and scarring. It's a disease with symptoms that most people would not want to admit having, but one sufferer says enough is enough. Sandena Neely is breaking the taboo of the disease by putting a face to it, while trying to raise the awareness of it by speaking out against a disease she has suffered with for more than a decade-and-a-half. She says she will no longer suffer in silence.
"People don't discuss it with anyone because of how embarrassing it is," said the 36-year-old. "My expectation is to bring an end to the privacy and taboo nature of HS. Many people suffer in silence because the disease is so little known, is misunderstood, misdiagnosed and there are a lot of misconceptions," she said.
According to family medicine practitioner, Dr. Patrick Whitfield, HS can cause flare-ups of painful, pus-filled red bumps and scarring. He said in some cases it can lead to severe infections or squamous cell carcinoma, a skin cancer. And if you've had acne, you're more like to get HS. While not contagious, the disease is painful to the person suffering with it.
The doctor, who practices out of Chesapeake Comprehensive Center at #7 Alexander Street Palmdale and who has treated a few cases of HS, said those who are female, overweight, smokers, have a history of acne, are between puberty and age 40 or have a family history of the disease are more likely to develop HS, which can flare for several days and go into remission for years.
According to the doctor, the condition usually begins as one or more tender nodules in areas where hair grows, such as the armpits, groin and between the buttocks where the skin rubs together, and in other areas of friction, like between the thighs or under the breast. He said within hours or days, the bumps get bigger, become inflamed and painful and drain pus, which causes scarring. An HS sufferer might also have a foul odor, caused by bacterial infection.
He said that HS is worsened by heat, humidity, stress, deodorant, being overweight, shaving the affected area and wearing tight, synthetic clothing.
Antibiotics, injections, and anti-inflammatories are used to treat it, with surgery being the most effective treatment.
Self care strategies that can help relieve symptoms include applying warm compresses or taking warm baths; avoiding prolonged exposure to heat and humidity; wearing loose, non-synthetic clothing; not shaving or applying deodorant to the area if irritation occurs; washing the area daily with antibacterial soap to reduce odor; taking non-steroidal anti-inflammatory medication for swelling and pain; trying meditation, deep-breathing exercises or other stress-related techniques; receiving counseling for feelings of isolation of depression caused by the condition and losing weight for those who are overweight.
"Surgery is the most effective treatment for HS sufferers, but it can cause scars and complication, so dermatologists try other treatments first. Injections in the lesions usually reduce swelling and tenderness within days. Oral and topical antibiotics, birth control pills, retinoids, and isotretinion (used to treat severe acne) may help clear it up. If a person's condition gets worse over time, or they develop scarring, they might need surgery."
According to the doctor, it's a disease that is difficult to cure.
"What some people have done is extensive surgery where they remove everything in that area, cut into the cavity and totally remove all the area that was involved. In some people, it avoids it coming back. Medication alone probably won't cure it," he said.
Because sufferers have to deal with chronic pain, many HS sufferers he said also develop depression. He said they might need counseling as well.
It is believed that one out of every 100 persons lives with HS. Neely was 21 when she got the first of many abscesses. She was diagnosed with HS 10 years later at age 31.
"In January 2000, I developed an excruciatingly painful cyst on my upper buttock and had it lanced in the emergency room, only to be followed in July 2000 with another painful cyst which had to be incised drained." She thought nothing else of the cysts and went about her life. She was fine until October 2004 when a cyst/abscess larger than the previous two surfaced in her lower buttocks. That was excised and drained, and forced Neely, who was then a law student, to take four months off from school.
In March 2005, she had to deal with another two golf ball-sized abscesses in the crease of her buttocks near her anal region. Faced with law school exams and mandatory internship, she consulted with a doctor who put her on a regimen of antibiotics and pain medication until she could have the surgery, four months later, after which she utilized the VAC (vacuum-assisted closure) therapy to speed up the healing process. She had yet another procedure in August to seal the wound.
Five years later, the painful abscesses showed up again, this time under her arms as well as in her groin and pubic regions. It was at that point that she spoke to her brother-in-law, a physician about her ongoing skin issues; he told her that she could have HS.
Neely researched the disease then sought assistance from a dermatologist who confirmed an HS diagnosis and treated her with oral and topical antibiotics which did not work. She was referred to a surgeon to remove the abscesses from her underarms.
"I was disturbed in the beginning, especially when I did not know what it was, because it just kept happening -- and the surgeries made it no better.
"Then when I found out what the condition was, it became worse, because when I read [about it on] the Internet, it said this will happen to you for the rest of your life. There is no cure; the only treatment is surgery and antibiotics. So that put me in a tailspin and I went on a regimen of surgery and antibiotics and from 2011 to 2013. Every time the abscesses came, I went and got them removed. And that's how I was going along until last year."
In 2014 she faced her most painful of abscesses; it was in her buttocks again. Neely was told she needed surgery again and would have to take at least six months off work.
"I was at my wit's end," said Neely. "I was tired. I was afraid, and I was depressed."
Making a change
She was also determined that things had to change. Neely who stood five-feet-two and weighed 202 pounds, made the decision to lose weight to see if it would help with the symptoms. She bought into the Whole30 nutrition program, reduced her weight by 43 pounds over a five-month period, and she said she saw her abscesses go away.
Neely is now a health coach with the company Watch Your Mouth, through which she coaches people to achieve their goals of optimal health and wellness with the Whole30 as one of her core program offerings.
"We're not quite sure what causes the symptoms to flare," said Dr. Whitfield. "But we advise people that keeping clean may help and cut down on the attacks; that people who are grossly overweight lose weight. So that could possibly help and that it's not because of what constitutes the diet, it's more because the diet constitutes towards weight loss; and that when they get the bumps to put warm compresses on it, to help the abscesses to go down.
We also tend to suggest that people wear loose-fitting clothing, because if it's too tight and irritates the area, that may be one of the things that trigger a flare. Some people, it depends on how severe it gets, actually laser hair removal the area... shaving can cause ingrown hair and that kind of stuff, but that depends on the severity," he said.
Since Neely has been open about her fight with HS she said other people who are plagued with the disease have been contacting her via social media as she strives to get a support group started. She said too many people are suffering and doing so in painful silence, which she said can cause depression as well.
According to Neely though, confirmation of a diagnosis is the first step to healing. She said the second thing is that people have to change their relationship with food.
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