I’ve been living with Hidradenitis Suppurativa (HS) since I was 13 years old but was only diagnosed at 23. There were a few tough years, but I eventually came to terms with the fact that I live with a chronic skin disease. I don’t let it be a big deal in my life but that doesn’t mean it shouldn’t be treated as such. It should. It is a big deal. No, it’s not a death sentence but it is by no means a normal life either. One thing I have taken solace in is that I know I am not alone.
My way of learning to live with HS is to not focus on the negative but to focus on the positive. If by speaking up about HS, I can help one person then it is worth it. If by taking the leap of starting my own wound care company I can help HS patients manage their wounds, then it is worth it.
6 years ago, I did take the leap and started my own company. When I started the company, I had been living with HS for 17 years and still I had not found a good way to manage my wounds. My dressings would slip, fall out or leak. They were tricky to apply and even harder to keep in place. My mounting frustrations led me to do something about it… it didn’t look like anyone else was going to.
So, I developed HidraWear. Since doing so I have become very comfortable in my own skin. I’ve met some amazing people. I am part of a community of great and engaging HS warriors and have learned to be an advocate for people with HS. Each day I see more and more progress being made in the HS communities. Doctors are beginning to recognise the symptoms faster, meaning people are getting diagnosed earlier. Awareness of the disease is growing which means more acceptance for HS warriors. The online communities enable HS warriors to communicate and share tips and tricks on how to manage the disease which means more relief.
From where I am standing, I am choosing to look at it all as very positive. If we have more positive and strong people stand up and help to raise awareness of Hidradenitis Suppurativa, who knows what could come about in a years’ time?