Global Hidradenitis Suppurativa Atlas<\/a>, roughly 1% of the world\u2019s population suffers from HS, or about one in 100 people. That\u2019s similar to the number who have rheumatoid arthritis.<\/p>\nYet, due to the lack of research and awareness, patients often go seven to 10 years before being diagnosed, said Dr. Hadar Avihai Lev-Tov, a dermatologist and assistant professor at the University of Miami who has been treating patients with HS for more than a decade.<\/p>\n
That ignorance has fueled misconceptions, including that the condition is contagious, sexually transmitted and caused by uncleanliness, which shames and prevents patients from seeking help.<\/p>\n
Although there is no cure, doctors prescribe antibiotics and topical steroids to reduce swelling and pain.<\/p>\n
\u201cWe don\u2019t have one single cause, so it\u2019s very difficult to find one single treatment that will take it away,\u201d Lev-Tov said.<\/p>\n
Growing up, Curp wrestled with fatigue and aches, not only on her skin, but also in her joints.<\/p>\n
\u201cAnything that rubs on it feels like you\u2019re being stabbed by a thousand needles,\u201d Curp said.<\/p>\n
She frequently experienced side effects from long-term antibiotic usage.<\/p>\n
Her mom, Ana Rabel, remembers watching Curp battle the condition.<\/p>\n
\u201cSeeing your child in pain is one of the worst things that can happen to any mother, especially when you cannot help her,\u201d Rabel said. \u201cIt was extremely frustrating.\u201d<\/p>\n
Curp\u2019s HS was isolating. She often turned down invites to pool parties and beach days. Sometimes she wore shorts or T-shirts over her bathing suit to hide her wounds.<\/p>\n
When she was 14, Curp started numbing her pain with alcohol. During her college years, she eventually began using drugs while partying in Miami\u2019s club scene.<\/p>\n
\u201cI was just like, \u2018I don\u2019t want to pay attention, I don\u2019t want to feel what\u2019s happening to my body,\u2019\u201d she said. \u201cI was very much on autopilot.\u201d<\/p>\n
Curp stuck to casual relationships; they were a source of self-validation. She was only intimate with people while she was under the influence and in the dark, to ensure nobody saw her scars.<\/p>\n
That changed when she was 25. She met her husband, Justin, at The Vagabond, a now-closed alternative club in downtown Miami. The couple was married for 12 years.<\/p>\n
When she was 26, Curp became pregnant with her son Ryan. For many people, pregnancy can calm HS symptoms, but hers intensified.<\/p>\n
Two days before labor, she underwent an incision and drainage procedure to alleviate the pain from a golf ball-sized abscess on her armpit.<\/p>\n
Breastfeeding caused her to develop abscesses as big as a quarter under her breasts, and sleepless nights severely depleted her energy. She also became anemic.<\/p>\n
\u201cPostpartum was brutal,\u201d she recalled.<\/p>\n
In 2015, she discovered a path toward healing through food bloggers with chronic autoimmune illnesses, such as psoriasis and Hashimoto\u2019s disease.<\/p>\n
Using her background as a chef, she launched a blog called The Castaway Kitchen, where she chronicled her meals, shared recipes and eventually talked about her HS journey.<\/p>\n
Rather than focusing on losing weight, Curp dedicated herself to reducing inflammation in her body and healing her gut. She cut processed sugars and gluten from her diet and began consuming more protein and anti-inflammatory foods, including sauerkraut and bone broth.<\/p>\n
Six months into her blog, her wounds were healing faster and hurting less.<\/p>\n
\u201cIt was crazy to see my inner thighs go from red, angry and swollen to just scars,\u201d Curp recalled. \u201cI was singing it from the rooftops on my platform, saying, \u2018This is amazing.\u2019\u201d<\/p>\n
After two years, she no longer had HS flares, and her blog, as well as her Instagram, had become a haven for people with chronic illness to seek advice and share their stories.<\/p>\n
Parish Armstead, a patient advocate for HS Connect who\u2019s had HS symptoms since he was 5, says Curp\u2019s content has helped him make dietary changes to reduce his flares.<\/p>\n
\u201cThe thing that Cristina says that sticks with me is, \u2018more fiber, more protein, less sugar,\u2019\u201d he said. \u201cStick with that, and you have a solid foundation.\u201d<\/p>\n
The same scars that once isolated Curp were now her superpower. So she decided to get tattoos over them, ranging from lemons and berries on her bikini line to mandalas under her armpits.<\/p>\n
\u201cI wanted to turn the scars into something beautiful,\u201d she said.<\/p>\n
In 2018, Curp started an 18-month program to become a nutritionist. She also published her first cookbook, \u201cMade Whole,\u201d followed by \u201cMade Whole Made Simple\u201d two years later. Her recipes focus on whole-body wellness, including improving blood sugar, digestion, hydration, metabolism and fatty acid balance.<\/p>\n
After selling her blog in 2023, Curp shifted her advocacy and nutritional content to social media, and in 2024 she joined HS Connect, launching a mentee program to train the next generation of advocates.<\/p>\n
She currently leads a cohort of 44 students, helping them understand medical jargon, chronic illness legislation and how to share their stories. Curp also oversees the organization\u2019s Spanish, nutrition and women support groups.<\/p>\n
The HS trailblazer hopes platforms like her Instagram continue to thrive so patients can feel empowered to take action in their lives.<\/p>\n
\u201cPeople need that community for mental health support and for medical advocacy,\u201d she said.<\/p>\n
This story is the result of a partnership between Florida International University\u2019s Lee Caplin School of Journalism and Media and the Miami Herald.<\/p>\n