How You and I Can 'Bring Hidradenitis Suppurativa to Light'
In my world, “HS” does not stand for “high school.”
Hidradenitis suppurativa (HS) is an autoimmune disease – a chronic debilitating skin condition endured by millions around the world.
Google at your own risk – images may be graphic. If you find the images disturbing, imagine having what you see as part of your own person.
Large, painful abscesses form beneath the skin, primarily in intimate locations, under arms and breasts, along the groin and buttocks.
These abscesses drain, some of them leaving huge open holes as a reminder of their visit.
They also make standing, sitting, lifting, holding a baby or hugging a husband painful tasks.
We call ourselves “HS Warriors” because we fight each day to maintain some degree of normal lives. Many of us also live with comorbidities such as fibromyalgia, polycystic ovarian syndrome (PCOS), rheumatoid arthritis (RA), diabetes, heart problems and a list of other maladies. The connection between HS and other ailments (if there is one) is unknown as little research into HS has been done.
HS in and of itself is not fatal. However, it can lead to methicillin-resistant Staphylococcus aureus (MRSA), staph infections, sepsis, cellulitis or squamous cell carcinoma – all of which are potentially life-threatening.
Up until recent years, HS has been a silent disease. Those who live with it didn’t speak of it due to the stigma of embarrassment and shame which HS manifests.
Even now, with all the support groups on Facebook for HS, the medical community remains in the dark. Doctors have never heard of it; patients are misdiagnosed with sexually transmitted diseases or, worse, accused of being drug abusers.
To change all that, I started the “Bring HS to Light” candlelight vigil on June 9th during HS Awareness Week.
HS Awareness Week is recnognized in the UK and has been for years. Here in the US, proclamations must be requested within individual states. The request process is under way and we’re about halfway there at this point.
For quite some time, I racked my brain to think of something that would possibly raise awareness on a large scale.
Last year, I attempted to do a “golf ball” challenge. Some of my own abscesses are about the size of golf balls and they certainly feel as hard as golf balls to me.
Much like the “ice bucket” challenge, I saw it as a way to possibly enlighten people about the effects of HS. Those without it cannot possibly understand how HS feels unless they sit on a golf ball to experience at least part of the pain HS patients endure.
I’m sorry to say it didn’t go over very well. One person even stated it was “degrading.” To which I responded, “No more degrading than HS itself.”
I’m happy to say I don’t give up that easily.
I considered doing a 5k walk or run. Unfortunately, so many people struggle with incredible pain when walking. Participation would be low.
So I racked my brain some more. Something that would be low-stress that wouldn’t require large groups of people, could be done at home if necessary, and could be done by anyone, anyplace in the world.
Ergo, a candlelight vigil.
The vigil isn’t just about raising awareness. Three HS Warriors who passed from HS related complications will also be remembered and honored during the vigil.
It can be done by an individual in the privacy of his or her home. It can be done with a small gathering of family and friends. Or it can be open to the public, a planned event including music and refreshments.
The list of participants is steadily growing. Get enough names on that list and word is bound to spread.
At least, that is my fondest hope.
Besides, few people criticize a candlelight vigil.
You can find more information here. Use the contact form to let me know if you are participating and your location so I can see how far the vigil can go.
Getty Image by Amit Vashisht