INDIANAPOLIS — Ileisha Tevis used to miss out on big moments all the time. She specifically remembers when she had to end a trip to Disney World early because she had to go to the emergency room.
"I had to go see a doctor there in Orlando because the flare-up was so bad. I could not move. It was painful because you have to wait until it literally busts," Tevis told WRTV.
Tevis, 37, has stage three hidradenitis suppurativa, or "HS" for short. It's a chronic skin condition that produces large lumps and boil-like abscesses under the skin. The pustules are painful and often develop in the armpit, under breasts, or the groin area.
Tevis started getting lesions on her skin after giving birth to her first child 13 years ago. She didn't go to the doctor at first because her family persisted it was "normal." Tevis remembers a conversation she had with her aunt, who told her that her grandmother also would get similar abscesses under her arms, and she used the lining of an eggshell to help relieve the pain.
"My family always talks about, 'oh, you know, we get boils,' and 'everybody does this' and 'everybody does that.' And 'it's normal,'" Tevis said.
She finally went to get checked by a general physician because the boils kept reoccurring. "And I started seeing more scarring underneath my arms. So that prompted me to go get checked."
"They immediately put me on antibiotics," Tevis said. "But they did not know what it was. They couldn't tell me what caused it. They couldn't tell me what it started."
Tevis said she went to doctor after doctor for at least three years, and they couldn't figure out what they were or why she was getting them. All the primary care physicians could do was prescribe her medication, masking the pain.
"I felt defeated. I felt like I couldn't do anything about it," Tevis said.
To make matters worse, her body eventually developed an immunity to the antibiotics she was prescribed. As a result, Tevis said she started using HUMIRA, which required her to inject herself in the abdomen.
"Sticking yourself with a needle is a totally different pain. It's like you're injecting pain on yourself," Tevis described.
After six months of HUMIRA, Tevis said she couldn't do it anymore and decided to start doing her own research. In her research, she found out about HS, and felt wholeheartedly that she was suffering from the skin condition.
She found that health, hormonal imbalance, genetics, and an assortment of factors could be the reasons for her flare-ups. Tevis said she couldn't control her genetics or hormones, but she could control what she put in her body.
"Slowly but surely, I started to remove things from my diet that I was reading about that could cause my flare-ups," Tevis said. Finally, Tevis found that baker's yeast and dairy caused her HS to break out through trial and error.
"Or just recently, wine. Wine? Nope!" Tevis said of finding out wine was also contributing to her HS breakouts. "I mean, it literally happens right after I drink it. I can feel it in my body right after I drink it ... So, no more alcohol. We're done."
Her journey to relieve her pain from HS is synonymous with her path to better overall health.
While learning what kept her HS at bay, Tevis started doing Zumba and weight training. At this point, she hadn't worked out for a few years due to the fear of lifting her arms and exposing her scars. But as a dancer in her formative years, she was really missing physical exercise.
"I like that burn. I know, unpopular opinion!" Tevis said, laughing.
Tevis came to be in the best shape of her life, physically and mentally. And her skin was no longer in as much pain. People at the gym noticed. "And they started to ask me like, 'are you a trainer?'"
Soon after that, Tevis discovered she wanted to help others find comfort in their skin and decided to become a certified trainer.
"A long story short: the people chose me, they chose me. I didn't know I was going to be doing this. I was in fashion design," she said. "I went to London for my design degree and now I'm in fitness!"
Tevis is now the owner of Fusion Fit Warrior, where she is the sole personal trainer helping over 20 clients every week.
The push for more research about HS
A couple of years ago, a local dermatologist confirmed Tevis' self-diagnosis of having hidradenitis suppurativa. However, only then she realized HS has four stages; luckily, she was in the third stage and able to come up with a medical regimen to further the HS from flaring up before needing surgery.
Tevis reports her left arm is now in remission, but she is still getting the occasional flare-up in her right arm.
"I just share my journey to bring awareness. So, I just want people to feel better because it really is debilitating. It can make you feel insecure," Tevis said of her 13-year journey to getting her HS under control.
Tia Ivy, an HS advocate from northeast Ohio, said she is not surprised by Tevis' painfully long journey to discovering she had HS. Ivy herself suffered from the skin condition for 20 years before finding real help.
Ivy, just like Tevis, remembers a time her HS became so bad she had to go to the emergency room. However, Ivy said the staff just gave her antibacterial soap and sent her home. "They never even said to go to a dermatologist," Ivy remembered.
"I've had it just about all of my life. But I wasn't officially diagnosed until 2017," Ivy told WRTV. About a year later, she started to have surgery to remove the affected skin, mostly on her thighs.
"I have some really huge scars. But that is to kind of like help recalibrate; to help reset everything," Ivy explained. "So I was just like, I'm tired of this. I can't go through this anymore. I need to find out exactly what is going on with my body."
There are several reasons HS can go so long undiagnosed, according to Dr. Chesahna Kindred, a dermatologist at "Kindred Hair & Skin Center" in Baltimore, Maryland.
Dr. Kindred told Ivy in an interview with Essence magazine, those impacted by the condition and doctors often mistake these bumps for ingrown hairs, pimples or other conditions such as a sexually transmitted disease (STD) because of the placement often being near private parts.
It's a lesser-known skin condition that disproportionately impacts the Black community. HS can appear on darker skin complexions differently, but more often than not dermatologists are trained to diagnose white skin.
“We know HS disproportionately affects Black people, with Black women under age 40 being at highest risk, but we’re still unsure exactly why. Limited research creates another hurdle for dermatologists to properly diagnose and provide an effective treatment plan,” Dr. Kindred told Essence. “People living with HS can benefit from early treatment that can provide symptom management. Impact of HS varies from patient to patient, but we often hear the pain is so intense that people have trouble walking, standing, or simply sitting. Just going about their daily life becomes painful and can lead to feelings of self-consciousness, depression and anxiety.”
Although the option of making diet changes was there for Tevis as a way to ease her HS, Ivy says that may not be the case for others. Especially adolescents, who can get it as young as 13, and are afraid to show others or don't have their own money to change their diet.
Ivy adds that because HS is an inflammatory condition, those infected could have another health condition as well, making it harder to do at-home remedies.
"What works for some people does not work for others. For example, like a lot of us [with HS], we use Tumeric, which people use to season their foods and stuff like that," Ivy explained. But if you're on Coumadin or Warfarin, which are blood thinners, then you cannot use Tumeric. Because Tumeric is a blood thinner. And of course, if you're taking Coumadin or Warfarin, you probably already have a pre-existing health condition. So that's why I always tell people that even if people list remedies, you really have to talk with a primary care physician."
Ivy became an advocate because she wants more people, especially in the Black community, to realize HS exists. However, her main goal is to get more physicians to study and consider the condition a diagnosis. Ivy says although people with HS are starting to use HUMIRA more (like Tevis began to), she believes there has to be more treatment options available because, as she said, "what works for some people does not work for others."
"We need more research. We deserve to know more. It's a lot of us dealing with this, and some people are worse than others. We deserve more," Tevis said.
Tevis says she used to be scared to be in the gym — but not anymore. "I don't care. Arms up!" She said with a smile on her face. "I'm not my scars."
The fitness trainer hopes to bring more awareness to the skin condition of those suffering. She also wants to be transparent with people from all walks of life who are looking to make a significant health transformation that she's been there. She says she's proof it's possible to do the work and get the results you want.
WRTV Digital Reporter Shakkira Harris can be reached at firstname.lastname@example.org. You can follow her on Twitter, @shakkirasays.