Holly — Pemphigus Foliaceus
Picture this: you're dealing with an itchy skin condition, like millions of others out there. It's isolating, and it sucks, but there's lots of info out there and support systems.
Now, take it up a notch. Imagine you have a skin condition that's so rare, it only affects 1 to 5 people per million. With a huge lack of education out there — explaining your flare ups to others can be tiring, and very tough.
Our friend Holly gets it. She deals with something called pemphigus foliaceus (PF). She first flared up over a decade ago, and oh boy it’s been a journey.
Let me guess. You’re saying ‘Hey! Yours Only. What the heck is PF?’ and honestly, Holly thought the same at the start. So let’s deep dive.
What is Pemphigus Foliaceus?
According to the ACD, PF is a rare autoimmune disease that causes weeping blisters on the skin. The immune system produces proteins called autoantibodies that damage the adhesion point between cells around the top layers of the skin. The skin cells break apart, and peel off.
It’s still not known why this occurs, just like we don’t know why we keep pressing ‘next episode’ on Netflix at 1am when we have work in the morning.
The start of Holly’s health story:
PF wasn’t Holly’s first health rodeo. Three months before falling pregnant, her thyroid had to be removed. It was overactive, and she had a large goitre (an enlarged thyroid gland) wrapped around her windpipe. Eek.
A few years later, it was found that her parathyroids (four small glands found in the neck) were damaged in surgery. She needed to be on 2000mg calcium supplements, every. single. day.
Life with PF:
14 years ago while three months pregnant, Holly found her first PF blister. They didn’t stop, but just kept popping up randomly on the lower half of the face — then the arms, legs, chest and scalp.
“I saw a dermatologist and his guess was some kind of folliculitis. He prescribed a steroid cream with strict instructions to not use it on my face — body only. The blisters continued to appear randomly.”
This was all pretty under control until three years ago. Holly had her first major flare up of blisters on her lower face and jawline. Ouch.
GP’s, antibiotics and acne treatments all didn’t work, and she still had no clue what her skin condition was. Nearly a year later, she got in contact with a new dermatologist, who did lots of tests. Props to him.
The blood tests took eight weeks to get back. The results? A pemphigus foliaceus diagnosis. This even shocked the dermatologist, coz it’s so rare. He prescribed a 0.01% steroid cream, and discussed treatments if things got worse.
I finally had a name for my condition and did as much research as I could.
Everything was pretty smooth sailing, until about two years later she had a WILD stress flare up. Oral steroids helps, then flared again when weaning off them. It was months of medications, her skin appearing burnt and weeping and fluid dribbling down her face 24/7. It was getting worse, rather than better.
Mentally, it was tough— she’d wear a mask if she HAD to go out, and really struggled to do things she loved, like play golf. Work trips were also hard, as her skin would flare from stress, the plane, or really anything.
With the support of her dermatologist, Holly started an autoimmune protocol elimination diet five months later in April 2024.
Then in June, I started using Yours Only. After a few weeks my skin started to improve every day and now I can even see my own skin tone/colour not red, angry, blotchy, bumpy.
How Holly got through it.
She’s not flaring up at the moment, but PF will be something she needs to manage through her lifetime. Her biggest tips.