I don’t clearly remember my first experience of Hidradenitis Suppurativa, but I think I was about 12 or 13 years old. It was like a dark cloud that followed me around. I would ignore it most of the time and get on with things, but when I got home I would look at myself and worry about what was going on.
I used to Google skin lumps, abscesses, boils and carbuncles because I didn’t know what it was. I would read about and tinker with different home remedies and sometimes they worked and my skin would clear up. I never said it to anyone, because it was very embarrassing and I thought there was something wrong with me.
When I was 17, things progressed for the worst and I showed my Mam. She brought me to the GP, who prescribed me with antibiotics. Over the next 4 years I would be prescribed antibiotics regularly, almost monthly to treat the abscesses.
Life went on and I finished school, started college and trained as a chef. I had regular HS flares, I took a few painkillers, ignored them and somehow went to work.
At 20 I was sent to A&E with what my GP thought was a massive cellulitis. I had surgery that afternoon to remove the affected skin and was left with a painful open wound which required a lot of aftercare. I was then referred to another surgeon who thought I might have Crohn’s Disease.
After several tests and investigations, Crohn’s was ruled out and I was sent to a dermatologist. He began treating me with more intense antibiotics and steroid injections directly into the lesions. This was an unbelievably painful experience which became the norm for about another year.
At 22 I was referred to another surgeon, who eventually diagnosed me with HS. I had a radical surgery to remove extensive areas of damaged skin. I was left with large open wounds that required a twice daily visit from a home care nurse. I was out of work for 8 weeks after this surgery.
Things settled down for a while after the big surgery and I left Ireland to travel to Asia, Australia and New Zealand. HS reared its ugly head several times during my time away. My emergency supply of antibiotics quickly ran out so when I got to Australia, I sought treatment.
In Brisbane I was treated with steroid injections in my thighs, groin and chest. Then I set off on the road travelling with my sister. We had an amazing trip, but my HS caused frustrating delays in our schedule in order for me to see a doctor on several occasions.
When I got to Melbourne, I attended their A&E with a massive flare and was prescribed more anti-biotics. I sought out a GP and she kept an eye on me while I was there. On my return to Ireland, 2 years later, I was straight into hospital for another surgery.
Since then, I have tried every anti-biotic combination possible, steroid injections, androgen blockers, insulin regulators, immunosuppressant therapy and have had about 13 surgeries, I have honestly lost count! While some treatments temporarily quell my symptoms, nothing has lasted for more than a year.
At 28, I became self-employed, opening a bakery in Dublin and I began to accept HS as part of my life, something that I would have to manage forever. I had seen how HS had impacted my life, I missed days and weeks of college, work and so many social occasions. I had my travels and holidays disrupted.
I had lived a life of taking painkillers and all sorts of medications. HS has affected my self-esteem and limited me in my clothing choices, physical activities and hobbies. I began to look for something that I could use to manage my symptoms every day.
One of the worst consequences of living with HS for me was managing the lesions and wounds every day.
Each morning would deal a different blow. I would spend a lot of time trying to bandage myself up. I would be late for or prematurely leave so many occasions due to dressings. Ensuring my dressings were in place and secure was next to impossible so I lived with the inevitable leaks and lost dressings.
That night, I was angry. I was angry because there was nothing suitable for me to use to dress my armpits. I was angry because I was trying my best to get on with my life and not let HS hold me back. I wanted to be able to get up and go like all my friends and family do. I hated that I had to spend so much time out of my day managing these lesions, and that the products I was using didn’t even work properly.
People living with HS are very resourceful and are improvising dressings all the time.
I had tried a few improvised dressings myself, so when I was 29, I approached a product designer to help me develop my idea into a dressing that I could use. This set me on a trajectory I never thought I would be on, but here I am. 5 years later, I have left my bakery behind to work full time on my new company, HidraMed Solutions.
We created an innovative wound dressing product that provides secure dressing placement and retention.
Users can apply, adjust and remove a dressing quickly and easily. Dressings falling off or leaking will no longer be a worry for people with HS and other chronic skin lesions.
I have received so much support from the med-tech community in the development of my idea. We received funding and support from BioExel, EIT Health and Enterprise Ireland and worked with industry experts to make this a reality!
My main goal in life now is to promote HS awareness and to develop my company, in order to make a meaningful improvement in the quality of life of people living with HS.
Suzanne, along with the HidraMed Solutions team, created HidraWear, a wearable wound-management garment, specifically designed for people living with HS. The garment has been developed to keep under-arm dressings securely in place throughout the day.
For more information about HS, visit our main HS page. If you need help or guidance about managing your HS, ask our dermatology nurse.