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Hidradenitis Suppurativa: Raising awareness of a long-term skin condition

It is estimated that 1 per cent of the world’s population have the skin disease Hidradenitis Suppurativa

'Suzanne Moloney's goal was not only to create a HS specific wound care solution but to also raise awareness of the disease itself.'

Suzanne Moloney's goal was not only to create a HS specific wound care solution but to also raise awareness of the disease itself

 

In Ireland, an estimated 60,000 people could experience the painful symptoms of Hidradenitis Suppurativa (HS). Yet, as this disease often goes undiagnosed for long periods, many people may not know why they experience painful lumps and boils, or what help is available.

When Suzanne Moloney came up with HidraWear her goal was to not only create a HS specific wound care solution but to also raise awareness of the disease itself. “More awareness will mean faster diagnoses and fast diagnosis is key to being able to manage the condition,” says Suzanne. With regular sponsorship of HS specific events like the 2022 HS Summit and a HS documentary currently in the making, Suzanne and her team are determined to raise as much awareness as possible.

HS can affect any part of your body
HS can affect any part of the body

What is Hidradenitis Suppurativa?

Hidradenitis Suppurativa (HS) is a chronic, inflammatory skin disease that causes recurrent and painful nodules, boils, abscesses and lesions of the skin.

HS can affect any part of your body, but it is mostly found in areas such as the underarms, under the breast, groin, ear, neck, inner thighs and buttocks.

Symptoms of HS

The symptoms you experience will depend on what stage your condition is at. There are three stages in the Hurley model.

Stage 1: You may not have many symptoms and they can be hard to distinguish from other skin conditions like folliculitis. In the mild stage of HS, you may experience blackheads, pea-sized nodules or single painful abscesses or lumps.

Stage 2: In the moderate stage your painful nodules may reoccur after they have healed, as well as new ones developing. Lesions will be separated by healthy skin. Painful nodules may occur in other areas where there were none before. You may develop scarring which tunnels under the skin. These tunnels are called sinus tracts.

Stage 3: In the severe stage, sinus tracts connect, and lesions develop and reoccur. There may be a lack of healthy skin, and so lesions remain open.

Other symptoms that you may notice at any stage could be fatigue, pain, reduced mobility, and a high temperature.

What causes HS?

The short answer is: nobody knows. But, the long answer is that there are lots of theories. Doctors believe HS is caused by follicular occlusion, meaning the hair follicles get blocked.

There are a few theories on why this happens. The first is genetics. A third of patients with HS have a family history of HS. However, you don’t need to have a family member with the disease to develop HS.

For women, HS most often begins in the teenage years; the average age of onset is 20. HS symptoms can worsen around a woman’s period, and studies have also found that menopause may exacerbate HS symptoms in some women. So, some doctors believe the cause of HS may have something to do with sex hormones.

The immune system is also implicated, and a dysregulation or malfunction of some of the cells that usually keep us safe results in HS. This is the focus of a lot of research, and there have been some successful treatments using medicines that alter specific parts of the immune response.

Other factors are believed to contribute to HS. These include mechanical friction, smoking, stress, and obesity. However it must be noted that anyone can develop HS, regardless of smoking status or BMI.

Ask for help

If you believe that you are experiencing the symptoms of HS, it is important to speak to a knowledgeable doctor or dermatologist.

A wound solution inspired by the HS community

Years of struggling to cope with painful HS wounds left Suzanne frustrated. “I felt that HS patients were overlooked by larger wound care organisations to the detriment to the physical and mental wellbeing of HS patients,'' she says.

Whilst developing HidraWear, a HS specific wound care dressing, Suzanne started talking online to other people living with HS. She realised that she was not alone in her frustrations and there was a global community of millions of people struggling with the same issues.

Suzanne channelled that frustration into creating a wound care solution, a process she started in 2014 and funded with her own savings and a grant from Enterprise Ireland in 2016.

Wound care that works

HidraWear dressings and medical garments are specifically designed to help HS patients with wounds in their armpits, groin and buttocks.

HidraWear is now available in Ireland through the Medical Card and Drug Payment Scheme. It is also available in the UK through the NHS, and similarly in Germany and The Netherlands.

For more information about HidraWear dressings for HS patients see www.hidrawear.com