Updated: Apr 24, 2019
They say the worst pain in the world is a paper cut.
Now, I’m sure any mother who’s endured grueling hours of labor would disagree. But one mother in particular, Patti Fiore, has suffered from worse than paper cuts - swollen, painful lesions, ulcerations, and opened wounds - for the entirety of her life. She, at only 43 years old, is now dying.
Patti battles a rare skin disease called Hidradenitis Suppurativa. It is a chronic condition that has no cure, minimal research, and is so uncommon that less than 200,000 cases each year are reported.But while it may not affect the masses, it affects few in a massive way.
Hidradenitis Suppurativa is separated into three gradual phases by a methodology called Hurley’s Staging System:
Stage 1:Isolated abscess formation that can usually be mistaken for acne. This, unfortunately, can often occur on sensitive areas of the skin, including the armpit, groin, vaginal, anal, and breast regions.
Stage 2:Recurrent abscesses and lesions that may restrict movement and require minor surgery to help treat them.
Stage 3:Otherwise known as ‘End Stage,’ this stage can include inflammation of the lesions to the size of baseballs, and can render a patient unable to function as a result of the swelling and pain. More severely, it can create a slew of additional health issues such as fistulas that, if unattended and untreated, can lead to the development of squamous cell carcinoma (a rare cancer). Equally dangerous, end stage H.S. can mean sepsis. Patti has experienced three different bouts of sepsis.
“This last time, I almost didn’t make it. And doctors say next time I probably wont,” Patti tells us, explaining that her ulcerations have become so prone to bacterial infection that she is regularly hospitalized.
“Patti has the worst case that I’m aware of,” says Christine, a dear friend of Patti’s who also has H.S. The two met in a support group that Patti helps run.
Despite the resistance the disease has yielded, Patti remains a beacon of hope for the H.S. community, and strives to make each and every person affected feel deserving of love.
A longtime, outspoken opponent of bullying - having endured unspeakably harsh treatment in her youth as a result of her H.S. – Patti shares her story with us in an effort to remind others like her that they are not alone in their strife.
“I’ve been through a lot, but I still believe there is good in everyone. I want to help people who need it, because I know what it feels like to be scared and alone. I don’t want anyone to think they are alone in dealing with this disease because they are not.”
Tune in Wednesday, April 17th, to learn more about Hidradenitis Suppurativa, and how Patti bravely tries to fight the stigma.