Share your experience with COVID-19 + Hidradenitis Suppurativa
A global registry for patients with Hidradenitis Suppurativa that have also had covid-19 has been developed by UCSF, in collaboration with the HS Foundation, the Canadian HS Foundation, Hope for HS, and other global Hidradenitis Suppurativa organizations. Cases of covid-19 in people with HS can be registered via a short survey about the experience, either by physician or patients themselves.
It is our hope that participation in this registry will help to inform important healthcare decisions for hidradenitis suppurativa patients in the framework of this global pandemic.
Survey participation is anonymous and takes 5-7 minutes. Visit the registry here.
John
I got HS 20 years ago in my right armpit. The initial soreness persisted for about one year before it subsided into flare-ups. Flare-ups happen mostly in warmer weather and some are worse than others, From sitting around idle so much recently due to Covid-19 I have a new HS area that has appeared between my left leg and groin which is also going to have to go through its’ initial establishment and reduction though this one is a lot more fluid-ous. Sometimes I’ll use the tea tree or lavender oil to try to calm it down. I’m also going to try the Vicks Vaporub which is also essential oil based. Eventually it should calm down but I know that will take a while. HS is a lot but there is also an occasional boil (staph) which can get really big and painful but resolve very well. Good Luck to All!
Briana
Hi John! I am glad to hear someone else uses lavender and tea tree oil. I have also found that topical colloidal silver gel clears my outbreaks. I often combine all 3 and apply it 3 times a day. I have also found that sunshine directly to the area seems to help heal it. Good luck to you
Peter
I’ve suffered HS flares around my groin/buttocks area for nearly 2 decades. Flare ups had caused hard weeping boils and painful sinus tracks which left horrendous scaring. Spending weeks off work immobile and in constant knife like pain I had become very isolated and depressed. I had several drainage surgeries which left deep open cuts in my groin. The flare ups became constant and I had reached the end of my rope physically and mentally. Doctors gave no hope for relief bar the usual antibiotics or a skin grafting surgery that often failed with a low success rate. My questions were routinely dismissed when I inquired if the flare ups could be food related. After years of treatment the antibiotics which used to clear it up short term ceased to work. I was in a really bad state. There was nothing left to do but accept my lot in life with this terrible affliction; except I still had one last hope. Maybe the doctors aren’t all knowing. Maybe it was food related. Thus with nothing left to lose, began my inquiry down that path. Everyone is different. What works for one may not work for others. Here’s the thing. It worked for me. I still can’t believe it. No more flare ups, no pain or even discomfort and the scarring is healing and disappearing more everyday. I have my life back. I did something that seemed crazy and utterly counterintuitive to me. I did the ultimate elimination diet for 1 month I strictly only ate grass fed beef, pink Himalayan rock salt and filtered water for 30 days. After that I slowly reintroduced fruits and vegetables and monitored how each food affected me via my body giving me small warnings if I ate something disagreeable. It’s coming up to a year now and I know this “lion diet” saved my life. My deepest wish had come true. Sure I still have hs, as there is no “cure” but I’m in charge of it now and I’m kicking it’s wretched ass. I still have trouble believing this crazy idea worked for me. It cost me 30 days out of my life to rid myself of a lifelong infliction. I never wanted to talk about hs. It was embarrassing, disgusting and plunged me on a downward spiral. But I have to tell my story now. If it helps just 1 other HS sufferer i will do it.
This is the greatest blessing I’ve ever known. I feel like my body is healed.
I Read the book “the hidden plague” by Tara Grant. Then I found mikhaila Peterson’s lion diet and read her story. Maybe this could work for others. I pray it does. With HS anything is worth a try.
-Pete
Alexandra
I’m 49 and I started having this issue around summer of 2020. I thought I was sore from wiping down desks at my janitorial job.
Given that much of our food is basically poison (think processed stuff), it’s not surprising that diet should play a part. Right now I wash each day with antibacterial soap and put coconut oil (or aloe vera gel if I have it) under my arms, it seems to keep it at bay, plus it acts as a deodorant, I’ve found. I also take D3/K2 and zinc. Plus I add turmeric to food, it’s an anti-inflammatory.