Woman with incurable boil-like bumps all over her body shares her struggles
A woman has shared her harrowing journey after being diagnosed with a rare skin condition where "boil-like" spots have formed on her body – which has put her life on hold.
Selina Ferragamo, a 28-year-old woman from New York, has been diagnosed with a rare inflammatory skin condition called hidradenitis suppurativa, which causes painful and boil-like spots to form on her body.
Initially, she mistook them for acne, but as the condition spread, Selina experienced excruciating discomfort, especially in her armpits, making movement difficult. She found herself confused and embarrassed, where she chose to avoid wearing underwear to help ease the pain, instead of seeking out medical advice.
Despite its unknown cause and lack of a cure, Selina altered her diet, underwent surgeries, and took medication to manage the condition. She faced hurtful comments from online trolls, impacting her mental health.
Selina's harrowing journey began when, at first, she noticed painful red bumps around her groin and pubic area, initially thinking it was acne spreading.
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Avoiding seeking medical advice, she later experienced extreme discomfort as the condition spread to her armpits. It hurt to walk, and she felt limited in her daily activities.
Selina, who worked as a librarian, said: "I didn’t know my condition was going to be a forever thing and my armpits had gotten so bad that it hurt to walk. Each step sent a sharp, shooting pain into my armpits, where I struggled to bend over and I really couldn’t do anything."
Despite having supportive friends and family, she faced hurtful comments from trolls, such as saying she has “herpes” or “skin mites.”
Selina adjusted her diet, underwent surgeries, and takes hormonal balancing medication. She highlighted the importance of self-care and urged others not to let the disease define them.
She said: "I’ve gotten the wackiest comments, such as I must have an STD or it’s because I’m overweight. It’s taken a major toll on my mental health, where some days, I feel like a burden on others, I’m anxious for eating something that could cause a flare-up.
"I get depressed that I can’t walk sometimes or if I have to cancel plans with friends. I want to be like other people who can ride a bike or go for a walk, but it’s just a constant stress for me."
Selina, who also suffers from polycystic ovary syndrome, which causes irregular periods, facial hair and acne, thought the “boil-like” bumps were related.
However, as it became harder to sit and walk due to the “unbearable” pain, she started questioning the exact diagnosis.
She said: “I remember being sat in school and there was a day where my underwear was right on top of the bumps, which hurt so bad – I couldn’t concentrate on anything but the pain.
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In 2014, after the aforementioned large bump started to form under her armpit, her mum took her into a walk-in medical clinic, where they removed and drained the abscess.
She claims that as they didn’t numb the area enough, the procedure was “agonising” and one of the “most painful” experiences of her life.
Sadly, this wasn’t the end of her harrowing ordeal and over the next few years, her condition proceeded to get worse.
Selina's boyfriend provided crucial support, helping her cope. She aims to raise awareness about the condition and encourage others to seek proper medical care. She says it's essential to prioritise self-care and not let the disease define your worth.
She added: "I feel very grateful I’ve been with my boyfriend for so long, as we’ve been together since school and he’s very understanding of my condition. It’s very hard to be open about a disease that can be so gruesome and unpleasant, where some people might not have the best reaction towards it.
"I’m very lucky to be with someone that takes care of me and doesn’t see it as a hindrance. It's all about communication and being as open about how you're feeling as possible though – you can't keep anything hidden.
"It’s not your fault, remember that, as this is an uncontrollable disease. You are never alone and all your feelings are valid – it’s okay not to be okay and you need to take time for yourself. It might take trial and error, but it’s very common for it to take years for a diagnosis.
"If a doctor dismisses you, then go to another one – we all deserve to feel good on a daily basis and not live with a debilitating disease. I’ve been out of work, couldn’t move, couldn’t wear anything tight and basically lived in bed the whole time.
"It was so isolating, but I’m grateful to my friends, family and boyfriend that they were there the whole time and tried to make me feel better. I make memes to help me cope living with this, as laughter is the best medicine. Everybody is different and everybody is going to have different root causes – there isn’t just one. And those that mind, don’t matter, and the people that matter, don’t mind."