Going to the Symposium on Hidradenitis Suppurativa Advancements Was One of the Best Things I Ever Did
This October, I got invited by the HS Foundation to come to the Symposium on Hidradenitis Suppurativa Advancements in Miami, Florida. This multiple day event organized by the HS Foundation and Canadian Hidradenitis Suppurativa Foundation hosted doctors, patients, and advocates from around the world to just talk about HS! It was truly amazing being among not just doctors from around the world talking about HS, but other patients too.
Going was one of the best things I ever did. While there, I started getting really bad flares in my groin and butt area. What better place to come down with flares than in a large meeting room amongst people that actually understand the disease?
Here are some of the reasons going helped me so much:
I met other patients with HS in person
In Miami, I met some of the greatest HS advocates on this planet. There were advocates from all over the world like Canada, Ireland, and various places around the US. Within 20 minutes of meeting them, it was as if I'd known them for 20 years.
Everyone was so kind and gentle. They immediately made my boyfriend (who doesn’t even have HS) and I feel so welcome and feel like we were in a safe space to openly talk about what we were dealing with. They were even asking my boyfriend how he’s doing with having to handle taking care of me a lot of the time. We just felt so supported talking with these wonderful individuals.
We would eat our meals all together and sit at the conference lectures together and went out to eat at some restaurants together. It was so nice and it honestly made me feel so much less alone being able to talk with other patients and hear their stories. These are now life-long friends and I even attend a monthly virtual support group with some of them.
I got a new doctor from this trip
Like I mentioned above, I started flaring badly when I was there. Maybe it was the nerves and stress of travel or maybe I ate something I shouldn’t have. Who knows. But I woke up feeling not the best and my butt was bleeding from the flares.
I spoke to another advocate about my flares and the procedure I usually have done at my general surgeons office. She told me incision and drainage isn’t the best to have done anymore and after researching, it’s true; “Incision and drainage is a useful procedure when patients present extremely painful fluctuant abscesses. It is beneficial in relieving acute pain and suffering, but this approach has been discouraged for long-term practice because of the high recurrence rate.”1
After speaking to a dermatologist at the symposium, he recommended I see a doctor in New York City that was also attending the symposium. My friend that mentioned that I shouldn’t do the I and D anymore actually introduced me to this NYC doctor and I’m really so happy she did. She’s such a kind doctor that is really trying to help and it shows she’s knowledgeable in HS if she was at the symposium! Her office even had a form for me to fill out JUST ON MY HS HISTORY! How wild!
It gave me hope
I saw a room filled with doctors and medical personnel just talking about HS, HS advancements, and how they can help patients feel better. I will repeat that: I saw a room filled with doctors and medical personnel just talking about HS, HS advancements, and how they can help patients feel better.
Please do not lose hope that there isn’t a doctor out there for you. There’s doctors all over the world trying to help us even if we aren’t seeing it firsthand everyday. Dr. Christopher Sayed from UNC Dermatology even had a lecture on new advancements and mentioned that 30 drugs are being tested for HS as we speak!
Please don’t give up hope. HS is gaining more awareness and there are doctors out there that are definitely trying to help us. This event truly helped me realize that and so much more.
Next year's SHSA will be in Phoenix, AZ so check out the HS Foundation for more info closer to October! Going might help you as much as it help me!
Where did you first hear about hidradenitis suppurativa?