Belfast woman opens up about rare skin condition that affects 1% of population

Cathryn Caulfield lives in chronic pain with a rare skin condition that she says sufferers feel shamed into bearing in silence –  but after almost a year with it, she is ready to speak up and shake off the ’embarrassment’.

Hidradenitis Suppurativa, or HS, is a painful condition that sees abscesses forming on areas of the body where sweat glands are located, and where skin rubs together – typically around the groin and armpit. It can also form under the breasts, on the buttocks and in the inner thighs.

And it’s because of where the boils appear, says East Belfast woman Cathryn that makes the condition so embarrassing for sufferers, and she admits, the pain even drives her to risk her own life.

She added: “It appears like abscesses on the skin and comes out under boobs, arms, groin and even on your bum, it is because of this that it is deemed an ’embarrassing illness’.

“It is really painful, when the abscesses have formed.

“I am forced to drain them myself by lancing the boil even though you’re advised not to because it can cause sepsis – but if you have one on your leg, and you don’t take it into your own hands you might not be able to walk that day because of the pain when your thighs rub together.

“Body image can take a massive hit with having these things that are on your skin, and you feel ugly at times.

“You can get really low – health is a constant obstacle.”

 

The 26-year-old was studying music at Belfast Met last year when the condition flared up. And while she didn’t know what it was at the time, she was convinced her GP’s initial assessment was wrong.

“I was actually ‘lucky’ that I got diagnosed so quickly, because the waiting time for most is around seven years,” said Cathryn.  

“My condition started when I was 14, but I hadn’t realised at the time that it was HS. I had a huge boil form on the inside of my thigh and I just assumed it was an ingrown hair.

“It burst and cleared up and I didn’t have another one until last year, when I was 25 and another abscess appeared in the same place.

“I went to my doctor this time and the GP thought it was an STD – even though I knew it couldn’t have been. So I was sent to the Gum clinic at the Royal Hospital and the nurse there knew straight away that it wasn’t an STD.

“I was given long-term antibiotics and referred for an emergency dermatologist appointment, which I have been waiting seven and a half months for.”

 

HS is so rare that only 1% of the global population is diagnosed with the skin condition.

The condition commonly occurs in young adults in their early 20s, but can occur at any age – prevalence usually reduces after the age of 50 to 55.

Women are more likely to develop HS than men.

There is no cure and no triggering factor – the disease can occur in anyone. According to Cathryn, the condition is commonly misdiagnosed.

Talking about the importance of getting an early diagnosis to prevent scarring, Cathryn says most sufferers think they are having a severe acne breakout. 

She said: “The condition progresses in stages, and I want to stress to people the importance of getting diagnosed early, because once the boils develop into stage three, you will need surgery, and a lot of people can be left disfigured.

“People always ask if I have changed my diet in someway and triggered it or tried going vegan or veggie or give up smoking to help clear it up – but there is no triggering factor, it can just flare up whenever, in anyone.

“One of the side-effects of HS is extreme fatigue and it feels like having a bad flu when the abscesses are swelling.

“The other thing is the money I am having to spend on skin care products and clothing, which isn’t always fashionable, including expensive seamless underwear, which is comfortable and won’t irritate the lumps.

“HS is just as legitimate as any other condition, yet there is no funding to help with costs.”

 

Cathryn says that she struggled to get help with her HS and doesn’t want other sufferers to be in that same position. So she is taking the matter into her own hands by posting videos about HS on YouTube for fellow sufferers and has started a Facebook HS community.

Cathryn said: “I finished college last year and was diagnosed during my final assessments. When it was diagnosed there was so little information and help, that I had to search alone to get support, but I found that there was no actual charity here to offer those services and I could only find one on mainland UK.

“So I started making YouTube videos about HS and my experience to let people know that they aren’t alone and that they shouldn’t be embarrassed. 

“Last week I got a message from someone in Saudi Arabia who suffers from HS and they were so grateful that I am giving this condition a voice and that I was someone who they could talk to about it.

“The problem is that HS is wrongly self-diagnosed a lot of the time because sufferers think that they just have a bad case of acne which is covering the whole body and not just the face.

“I want people to realise that HS is nothing to do with being dirty or a bad diet. If you need to go to your doctor then do because it is a disease, just like any other and needs to be diagnosed.

“It is about being brave and taking that first step, and taking control of your body again.”

 

If you would like to find out more about HS or want to connect with Cathryn and other HS sufferers, you can do so at www.facebook.com/HSNorthernIreland.

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