Not many of us would stop and think how far we might have to extend an arm when we’re thirsty and need a drink. But for people like Jeremy, who suffer with Hidradenitis Suppurativa, that is the reality Jeremy faces when he is suffering a flare-up.
Hidradenitis Suppurativa, or HS for short, is a debilitating chronic inflammatory disorder of the hair follicles, and despite the fact touches the lives of up to 4% of the world’s population, very little is known about the true cause of this disease or even effective treatments for those afflicted with HS.
HS is a chronic, incurable skin condition that causes painful bumps, nodules and abscesses (collection of pus) and it affects the hair follicles and sweat glands that then lead to scarring. These painful lesions are typically found in high-friction areas on the body such as the armpits, groin, buttocks, waistline, breasts and private parts. Although they are not contagious, these lumps cause pain as they form and then once they burst can ooze pus and blood constantly, and some may never heal.
HS is so much more than just a skin condition and it reaches far beyond deeper tissue within the body. HS is not only a chronic, debilitating physical illness, but it is one that often carries deep emotional and mental scars as well. The understanding of HS seems to be in its infancy with limited medications, no strict protocols for treatment plans and therefore leaves people with HS at a loss when it comes to flares and the progression of the disease. Both men and women can be afflicted and the only thing that seems for certain with HS is that there is currently no cure.
Jeremy’s initial diagnosis came in 2015, and while he found himself in the first stage of the disease, it wasn’t debilitating. Eventually he began taking the only current FDA medication, Humira injections monthly, which seemed to keep the disease somewhat at bay. He continued to work and despite his diagnosis, he and his wife decided to do what many people only talk about doing – selling almost all of their belongings and they set off to begin traveling the world indefinitely.
Jeremy and his wife Jillian are photographers and videographers and their first destination was a two month stay in Mexico to connect with charities and to help people and to give back. Unfortunately, Jeremy could only get one month of the medication at a time, and once he got to Mexico he found that he was not able to get Humira, an expensive and somewhat limited worldwide medication, he learned. They continued with their travels, not realizing that even though he had stopped taking the medication, he was still somewhat protected by the residual effects in his system.
While in Brazil for three months those residual effects wore off and Jeremy found himself in a state of decline. Luckily one of his fellow charity workers was able to connect him with a dermatologist, but in Brazil they had to have government approval for Humira, and as a foreigner, he was not able to obtain the medication that had helped him keep his HS from progressing.
Jeremy describes his HS, which impacts his armpits, groin, testicles, inner thighs and buttocks, and has left visible scarring and wounds that constantly seep, as just the tip of the iceberg. Beneath his skin in places are golf ball sized lumps interconnected by tunnels. He found himself with limited mobility in his arms, excruciating pain while sitting, laying down, and at times, in extreme pain with moving at all.
Jeremy talks about how humbling it was to find himself utilizing wheelchair service to get through the airports and travel home to Lewes in November 2020. Here he was, someone who was active, spontaneous, creative in not just photography and videography, but also a musician, who now couldn’t even walk because of his HS.
When he retuned home to the US, Jeremy and his wife moved to Lewes where he essentially had to start over with his medical care. He had to find a new team of doctors, explain his progression with HS, and during this process found he was also now suffering from another autoimmune disorder, rheumatoid arthritis.
Oddly enough, the rheumatoid arthritis (RA), which is also often found in people with HS, has helped get him additional medications that seem to be helping with his HS. However, this happened over a period of time where Jeremy found himself stripped of a normal life. He says for over six months he was barely able to make it from the bed to the couch and back each day. He relied on his wife to do essentially everything for him including cutting up his food because he was unable to move his arms.
“It was a really dark time for me,” he recalls about not just the physical pain, “some of the worst parts of this disease for me has been watching my wife deal with this. I didn’t want her to have to overcompensate because I was unable to do anything. I couldn’t move. Everything hurt. She’s having to cut my food because I can’t make the motion with my arms, and here she’s doing all of this stuff, but we had a plan to travel the world indefinitely. We sold all of our stuff. We wanted to go to all these places and to give back, and here I am…I can’t even get out of bed. I have this overwhelming guilt because my wife can’t fully live and that she has to see me like this. I was in constant pain and there was nothing I could do about it.”
The emotional and mental sides to HS are apparent to Jeremy not just in his own life, but he sees it in the support groups for HS. People talk openly in these forums, which is something many feel ashamed to do in their own lives. Jeremy has connected with fellow HS sufferers who often express they are depressed and some who say they don’t want to go on living in such pain and often alone in what he calls an “ugly” disease. Tears come to his eyes as he explains, “I don’t know what I would do if I didn’t have the support of my wife. I struggle to think about how I could have gotten through the worst of this without her. Here I had this cool life where I’m spontaneous and creative and it was all just taken away by HS.”
But there is a light for Jeremy in his latest treatments where he is beginning to see his symptoms abate thanks to the RA drugs, but it’s a frustrating trial and error process along with dealing with access to the drugs because of things like the frequency of administering them thanks to insurance. He, like many others with HS, also try a barrage of other treatments ranging from diets to home remedies to herbs and oils looking for some relief. “In the support groups, someone might post something that has helped them, so you give it a try, “he says.
“But what works for one person might not help another,” his wife elaborates, “without a regimented, approved medical treatment plan from doctors, people with HS are left to try what they can. You should see our medicine cabinet!”
As a last resort, doctors may offer surgery to HS patients, but as Jeremy’s doctor explained it’s a complicated surgery that would require in his case, the removal of all of his sweat glands and hair follicles in his armpits, a skin graft from his legs, he’d be more open to infections during a 8-9 month recovery period, and there’s no guarantee the abscesses won’t return. HS Connect Note: It is not possible to remove all glands and follicles. Grafts are not necessary in most cases. Wounds typically take 6-9 months to heal completely, however, you are able to resume normal activities before that time.
This is why Jeremy has been so outspoken about what is often a disease where people suffer in silence. Exposing this disease to the public will hopefully bring more awareness, more research and ultimately, he hopes, a cure. Until then Jeremy plans to continue to follow the RA treatments, look for other ways to help ease his symptoms, and most importantly continue to push for more awareness of HS and support people also suffering with the disease.
“HS itself isn’t deadly, but what’s the point of life if you can’t live?” he asks.
Jeremy and his wife plan on resuming their world travels as soon as he is able, and she reminds him often that even though there is no cure, “this is temporary.” They both look forward to a time, in the near future, when they can look back on what he’s been through knowing it’s in the past.
Jeremy is now a part of HSConnect and he hopes in his world travels to be able to connect with and share other people’s HS stories and bring HS awareness to a global scale. “It’s still in its infancy…but I have the tools to bring people together and help the world. We’re already doing local charity work and taking donations wherever we go, but why not do this too?” he asks.
You can follow Jeremy at IG: SiK_Imagery
FB Page: https://www.facebook.com/SiKImagery/
YouTube Channel: https://m.youtube.com/channel/UC2043u82GIwZ6dn0tVmdx2Q
Learn more about HS -@HsAwarenessNoMoreSilence and HS Connect
Writing: Susan McLean Photography
Photography: John Mollura Photography