The woman who was diagnosed with herpes actually had this skin disease

At age 13, Leia Ali began to note lumps in her armpits. She treated what she thought were pimples or ingrown hairs with warm compresses until they shrunk. It became a daily practice for Ali. But when the lump returned near her right breast and was extremely painful, Ali, then 18, decided to make an appointment on the campus clinic to get it checked out. That’s when her life was turned the wrong way up.

“It was a horrible experience,” she recalls. “The doctor did some digging and digging, and then everyone left the room. Then the doctor said, ‘Well, it looks like herpes. So I’m going to ask you to talk to one of our nurses.’ My eyes got big. Herpes?!”

She had a blood test done and the outcomes for a possible STD got here back negative. It was time for a second opinion.

Within weeks, one other doctor finally discovered what was unsuitable with Ali’s skin. She was diagnosed with hidradenitis suppurativa. According to expertsHS, or pimples inversa, is an inflammatory skin condition that causes painful, boil-like bumps under the skin. It is estimated that about 3.3 million people within the United States live with HS. However, women and African Americans usually tend to suffer from the condition in comparison with other demographic groups.

While Ali was grateful for the correct diagnosis of her skin condition, it opened the door to more questions on how you can live a top quality life. HS has affected Ali each personally and professionally. She has had to seek out alternative profession paths and alter the looks of intimacy in her relationships. Lumps that ooze pus, cysts, and significant scarring, all a part of this ongoing condition, can often be serious.

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“I’ve lost more jobs than I can count because of HS. No one would understand if I said I had to take sick leave because I had a flare-up or because I had a boil or a cluster of boils in an obscene place,” Ali says. “I might not have to go to the ER to get it drained or it might drain itself. Since I was a nursing student, I had to change my major and drop out of school because I couldn’t stay healthy. Nursing is stressful. I met a mentor I’ve known for 20 years who helped me think about a career in HR. I ended up getting a degree in human resources management from Lindenwood University. That allowed me to work in places where I learned what FMLA covered, what short-term disability covered, and I had the benefits I needed to still be able to see a doctor.”

She continued, “As far as the intimacy factor, I think that’s the missing piece in the whole conversation about HS. You see flare-ups under your armpits, your breasts, and around your groin. So we need to talk about intimacy. There’s a lot of embarrassment and shame that keeps us from having those conversations. So I want to keep the conversations open for women who look like me. I want people and women who look like me to know that there’s help out there. You don’t have to suffer in silence or be ashamed, and you’re not the cause of it.”

Now 45 and a successful Global Learning & Development Technology Specialist at RELEX Solutions, Ali is an HS advocate who hopes to lift awareness of the condition and show others that they usually are not alone. To do this, Ali has joined an academic campaign Create HStorysponsored by global pharmaceutical company UCB to shine a light-weight on her experiences and help break down the stigma surrounding it. Through Make HStory, others can learn more concerning the condition, find resources to manage with it, and support various advocacy groups.

“The Make History campaign is for women and men. It’s a platform where we tell our stories so that other people can see us, hear our voices, our tears and anything that will help them understand what it’s like to live with this disease,” Ali explains. “There may be people you’re close to or in your network who are struggling with it. But they’ll never say anything or feel comfortable talking to you about it. It could be your children, your spouse, anyone.”

While there’s no cure for HS, as Ali learned more about it, she made it her mission to not let her condition stop her from living her best life. She’s built a fantastic relationship with her doctor, incorporated stress-reducing practices into her day by day routine that help with symptoms, and regained her confidence in her body.

“To regain your confidence, you have to look at yourself in the mirror, completely naked, and praise yourself regularly. Because it all starts with you,” Ali says. “After therapy, meditation, natural supplements, and honest conversations with my community, I no longer feared having HS. I stopped being ashamed of it. The last seven years have been something of a rebirth for me. And it’s been an incredible, incredible space.”