From baker to wound care innovator – my HS story - The Irish Times
Suzanne Moloney, the founder of HidraWear, first experienced the painful symptoms of Hidradenitis suppurativa as a young teen.
At the time was a Suzanne a typical teenager who loved sports and running. She kept quiet about what was happening – she was embarrassed, as any 13-year-old would be. By her mid-teens, the lumps were bigger and harder to manage. Suzanne finally mustered up the courage to speak to a GP when they became infected.
Getting help
Suzanne was prescribed antibiotics every time new lumps flared up, which helped but didn't stop the painful growths coming back. This cycle continued for years as more lumps appeared under her arms and at the tops of her legs.
At age 20, Suzanne was admitted to the hospital emergency unit with suspected cellulitis, a potentially serious bacterial skin infection. She underwent emergency surgery that afternoon to remove the affected skin and was left with a painful open wound requiring a lot of aftercare.
During the 10 years following her first lump, Suzanne tried every combination of treatment available: "I was referred to doctor after doctor, surgeons who thought I may have Crohn's disease, and I underwent multiple investigations."
The treatments that followed didn't work and Suzanne's HS worsened, resulting in radical surgery
As well as copious rounds of antibiotics, including intravenous antibiotics, Suzanne was treated with steroid injections, androgen blockers, insulin regulators, immunosuppressant therapy and every diet and alternative therapy going. Though some treatments provided temporary relief, nothing lasted long.
Suzanne eventually met with a doctor who would change her life – a surgeon in Bons Secours Hospital who researched and recognised the symptoms of Hidradenitis suppurativa (HS). The good news: the illness had a name and was not rare. The bad news: there is no cure for HS.
The treatments that followed didn't work and Suzanne's HS worsened, resulting in radical surgery that left her bedbound and needing nursing care for eight weeks.
Managing wounds before breakfast
Despite the pain and the open weeping wounds on her body, Suzanne finished school and college, where she trained as a chef. She was determined that HS wouldn't stop her from doing the normal things that other teenagers and young adults were doing.
The DIY wound dressings had a tendency to come loose or worse – fall out!
She travelled, worked and eventually opened her own bakery. Through all this, every morning before breakfast she had to clean, treat and dress multiple open wounds on different parts of her body.
"In terms of managing the open, draining wounds," she says, "I tried everything I could think of – kitchen roll, over-the-counter dressings, plasters, bandages, anything I thought might work. Cutting and sticking things together to try and make something that would fit and stay in place.
"The wounds have to be covered for day-to-day life, otherwise your clothes get ruined and you have unsightly, embarrassing, stains leaking through for everyone to see. The DIY wound dressings had a tendency to come loose or worse – fall out!"
Life-altering pain
Suzanne describes HS pain as "a red-hot blade". "It's the type of pain that can strike with the slightest of movements and make you yelp with surprise."
The pain and discomfort of HS can make the simplest of tasks – walking, lifting your arm, even sitting – extremely difficult. The pain can become so unbearable that people are unable to carry out their jobs or leave the house.
"Even when your flare-up has healed, the pain doesn't go away." Suzanne says. The severe scarring often left behind by the burst lumps can be painful. "You never know with HS when you are going to have a flare-up or how bad it is going to be."
A wound solution
Years of struggling to cope with painful wounds left Suzanne frustrated. "I felt that HS patients were sadly overlooked by larger wound care organisations to the detriment to the physical and mental wellbeing of HS patients.''
She channelled that frustration into creating a wound care solution for HS patients. The process began in 2014, funded with her own savings and a grant from Enterprise Ireland in 2016.
While developing HidraWear, her HS specific wound care dressing, Suzanne talked online to other people living with HS. She realised that she was not alone in her frustrations and that a global community of millions of people struggled with the same issues.
Wound care that works
Fast forward to 2020, and Suzanne's idea for a HS-specific wound dressing became a reality. HidraWear was available in Ireland immediately, before expanding to the US, the UK, Germany and the Netherlands. In 2021, HidraWear became the first HS wound dressing available through the Irish public health system, the HSE.
"The responses have been incredible," she says. "People have told us that it boosts their confidence because it makes bandaging areas like armpits much easier."
Aside from the excitement of helping HS patients better manage wounds, Suzanne and her start-up team of four have a bigger mission: "Through HidraWear, we can help raise HS awareness," she says.
Patients worldwide have contacted Suzanne to tell her that they read about HS on the HidraWear website and social media, recognised the symptoms and went to their GP. This means people are getting diagnosed quicker and not suffering in silence and alone anymore.
"Knowing that we are helping people achieve diagnosis by bringing more awareness to HS symptoms is one of the things I am most proud of."
Anyone who suspects that they could have HS is encouraged to speak to their GP as soon as possible. For more information about HS and HidraWear, see www.hidrawear.com
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