When someone lives with a mysterious illness for years, finally getting a correct diagnosis can be life changing. It sparks hope and can generate a new ambition to share information with others who face the same challenge.
That’s exactly what happened to Tia Ivy, a home health care aid based in northeast Ohio.
Ivy first started to notice skin issues in her teen years. “I thought it was maybe acne,” Ivy says. “I wasn’t sure.”
The bumps eventually disappeared. But in her mid-20s, they returned. Ivy tried different acne products. One doctor even thought she had a staph infection and told her to use antibacterial soap. Nothing helped.
When Ivy was 36, she switched health insurance providers and saw a new primary care physician (PCP). This doctor immediately recognized her skin condition: hidradenitis suppurativa (HS).
This chronic condition affects only 1 percent of the population and is thought to be caused by an overactive immune system that contributes to inflammation below the skin. Doctors often mistake it for acne or a skin infection, just like what happened with Tia.
“It was overwhelming to find out what it really was,” Ivy says. “I was thinking, ‘What?’ All along, I’ve had this disease that I couldn’t pronounce and had never heard of it before. But the doctor was really compassionate, and she said, ‘You need to follow up with your dermatologist.’”
Although the exact cause of HS is unknown, the symptoms patients see on their skin come from the inside of their body. An imbalance in the immune system results in large, painful boils on the skin that can rupture and leak fluid that can have an odor. As HS progresses, deep tunnels form beneath the skin and worsen over time.
The disease creates fatigue, scarring and severe stabbing sensations in the skin. It makes ordinary living, relationships and jobs very difficult. Even the smallest efforts can be painful and exhausting.
“Going to big stores, for me, is a ‘no,’” Ivy says. “I just get too tired. So I go to smaller stores. I also have to be careful about going to concerts and events. You have to pace yourself.”
Seeing a dermatologist helped Ivy realize she wasn’t to blame for her problem. Like Ivy, many patients are offered hygiene recommendations by health care professionals who don’t recognize or fully understand the disease. These patients are left to feel ashamed or embarrassed, thinking they caused the condition.
The bumps, boils and scars themselves can also cause self-consciousness.
“I’m African-American, so we keloid,” she says, describing a type of scar that is raised, firm and fibrous. Ivy had such a scar from surgery to remove a cyst.
“People would see my scar and wonder if something had happened to me,” she says.
Ivy’s experience isn’t unusual, says dermatologist Joslyn Kirby, MD, associate professor, Pennsylvania State University.
“If a doctor isn’t familiar with HS, they might see two little pimples and sweep it under the rug,” Dr. Kirby explains. “The reality is that one of those pimples feels like several knives digging into the skin.”
For patients, it’s critical to find a dermatologist who understands HS and can explain its effects.
“When patients are informed and educated about their disease, they feel in control,” she says. “They can partner more effectively with dermatologists to get the care that they need.”
Having open, honest conversations with a dermatologist is critical, Dr. Kirby says. “Don’t wait to explain to your doctor the true impact HS is having on your life,” she says. “You have a right to be in control of your disease and your future.”
Trying not to be a “superwoman” has helped, Ivy says. So has sharing information with others. Ivy has her own Twitter and Facebook accounts where she shares photos, videos, articles and other posts that offer facts and research about HS.
Ivy believes educating patients about an unknown medical condition like HS is more important than ever. She says they can protect themselves by fully understanding their disease, practicing self-care and staying closely connected with their dermatologist.
“Living with a chronic illness is challenging,” she wrote in a recent Facebook post. “However, when a patient living with a chronic illness doesn't know what they need, it becomes even more difficult. Ask your health care provider questions.”
For Ivy, educating other patients helps her feel like she’s turning a difficult situation into something positive.
“I’ve gotten a lot of positive feedback on the social media I do,” she says. “By me advocating for HS, I’m able to take my power back.”