ORIGIN STORY – NELSON

My name is Nelson and I’m a 37-year-old male from Edmonton, Alberta, Canada and I have HS. This is my HS Origin Story.

My HS symptoms started when I was really young. At seventeen, I got my first boil behind my ear. I went to a couple different doctors but still did not receive a diagnosis at that time. That first boil took between three to four years to fully heal. After several visits to different doctors, I still had no diagnosis. Due to the fact that I still lived in Africa at the time,I thought it was because the doctors were not good enough.

I ended up deciding to take matters into my own hands by lancing the boil behind my ear and rubbing it with organic lemon. I noticed a difference after popping it, and I had drained it enough so that all of the pus was out and clear blood was coming out of the cyst. When my mother realized what I had done, she took me to the hospital to get wound care and the boil never came back.

In 2005 I moved to Canada, and after three years I realized that I was beginning to suffer from cystic acne. I tried again going to different doctors, but they only gave me antibiotics and acne creams which didn’t work for me. It wasn’t until my family doctor referred me to a dermatologist that I was able to find out my diagnosis. To cut the long story short, I ended up asking my dermatologist to refer me to a Plastic Surgeon.

In 2014, I had extensive surgery done on my thighs, buttocks, tailbone and had my armpit glands removed. It was the most painful treatment I’ve ever been through and the worst time of my life. I was in the hospital for a month and when I was discharged, I stayed home for three months getting home care treatment once a day.

 During these four months, I felt humiliated due to the fact that I had to undress almost every day in front of strangers so they could assist me with my wound care. My recovery time was made easier by my siblings – I’m not sure how I would have gotten through that time without them. As of today, I still struggle with two spots but I get regular steroid injections to minimize the flares.

Currently, my treatment plan consists of getting steroid injections every two months, although COVID-19 slowed that down a bit. I also watch what I eat and I’ve noticed that fasting helps to lower the severity of my flares. HS has impacted multiple areas of my life like my career choice, health, hobbies, relationships/confidence etc.

I try to stay positive while dealing with the negative feelings often associated with HS by trying to exercise. I also talk to my immediate family members, and I read, cook and meditate. I have talked with people about my HS.

My daughter is the one who I would call my Hero because she has been literally breathing life into me for the last twenty-two months. Some tips and tricks I use to manage my HS include fasting, eating as healthy as I can, avoiding stress, seeing a dermatologist, washing with African soap and exercising.

 I’ve tried fasting whenever I notice new flares forming, and for me, it kind of slows down the growth of the flare. By fasting, I mean not eating breakfast or lunch.  When I am not fasting, I try to avoid certain foods that are high in carbohydrates, and I only eat protein-rich foods and salads. I am still trying to figure out the best ways to be consistent and efficient with my meals.

It takes a while to notice the changes when using it, but African soap seems to help me with my HS and Cystic Acne. When I use it, I notice that my flares dry up, but only when it’s still in stage 1 or stage 2 and if tunnels have not yet formed. I usually buy it from an African beauty store located here in Edmonton.

A positive experience I’ve had related to my HS involves the Surgeon who operated on me, Dr. Edward Tredget. He made me feel like I was a human being again. He changed my life, and only four years after my surgery, I was in a relationship and had my daughter. For that reason, he is my hero and I will never forget him. 

If I could say anything to an HS Hero who is struggling or a newly diagnosed HS patient, I would tell them… don’t give up yet. Keep educating yourself on this condition and try every way that you can to make your life worth living. 

#YouAreNotAlone