How I gained the upper hand on my acropustulosis
In 2016, the National Psoriasis Foundation asked me to share my story and liked it enough that they published it, both in print and online. It’s still one of my favorite blogs, and very accurate to date. Here’s the re-post from NPF!
Traveling musician and guest blogger Ashley Norton shares her experiences living with a rare, debilitating form of psoriasis that affects her fingers.09/19/16 | Ashley Norton
About 10 years ago, I became a very small percentage of the population diagnosed with a rare and painful auto-immune disease that effects my nailbeds and fingers. The official name of my disease is acropustulosis. It is in the psoriasis family and closely related to pustular psoriasis but much more localized and a lot more stubborn to treat.
I wear Band-Aids covering from knuckle to fingertip. Both of my pointer fingers are infected, and as nature’s cruel joke, both of my middle fingers as well.
Does it hurt? Yes. It hurts to do everything. I learned to play guitar through the pain and my bandmates usually understand when I hit a wrong note if a Band-Aid gets caught under a string (the ones I’m still playing with anyway, both bandmates and fingers.)
What does it look like? Like zombie fingers. You’ve seen the movies and TV shows. Those guys walking around with green, dead skin falling off their bodies? It looks like that, but only on my fingers.
Additionally, little pustules made up of white blood cells form and surface under the skin and nailbeds, then burst. New pustules cycle underneath that and repeat. This builds up in my nailbeds, which often infects, bleeds or flakes off, deforming my fingers and nails.
The Band-Aids act as another layer of skin, keeping outside infection away and, well, keeping my nails from falling off. They provide pressure, which helps with the pain, along with a large supply of ibuprofen I carry with me at all times to aid inflammation.
Acropustulosis is a stubborn jerk. Treatments I’ve been on include months of UV light therapy, steroids and creams, non-western medicine including every supplement you can think of (yes, even that one), endless hours of every form of yoga and meditation. Nothing worked. Not even a little bit.
Does diet help? For me, no. I went gluten-free and dairy-free for five years, as well as sugar-free and vegan for some of that time. I’ve tried being oil-free, egg-free, alcohol-free, grain-free, corn-free. The improvement was always zero.
Is there a cure? No. I hear a lot of this: “There HAS to be a cure!” Well, no, there doesn’t, and there isn’t one hiding under the couch. You can go into remission, but there is no cure.
What is the most annoying or frustrating part of having acropustulosis? People who aren’t doctors—even some people who are doctors—trying to fix me. I often walk away to avoid hearing about how a chiropractor cured your cousin’s eczema. That is not what I have.
I’ve had nurses say things like, “You’re lucky it’s not that bad because it’s so localized,” then apologize profusely after removing my bandages to reveal the horror underneath. I recently had a doctor take up 10 minutes of my exam to lecture me about my personal decision to wait to go on biologics. He then ran out of time to answer the questions that mattered to me.
The truth is I wanted to try everything else first. Biologics suppress your immune system to block overactive white blood cells from attacking your healthy organs, leaving it too weak to fight off other diseases. They’re also very expensive.
But when I realized my acropustulosis was getting worse, I decided to give it a shot. Literally. I took my first injection on Feb. 11. Here’s the result: My fingers cleared up by 80 percent in two days. After a week, the nails started to grow back. Today, they are 100 percent clear from pustules.
Sometimes a new pustule shows its face, but the next injection seems to take care of that.
Now everyday activities are like brand-new experiences for me. I can swim, run my fingers through my hair, type with all of my fingers on a keyboard and eat a hamburger. Intimacy isn’t embarrassing anymore. I can go on a date and hold someone’s hand without caution. I can have normal conversations with strangers. Most importantly, my guitar playing has improved by about 15 to 20 percent.
Touring with my band, Whitherward, full time has become interesting considering I have to keep the medication refrigerated. But ice packs help on the road, and the inconvenience is well worth it, since ultimately, it’s the music that keeps me going.
Ashley Norton is a blogger living with acropustulosis in Nashville. She is the guitar player and vocalist in the band Whitherward, which is currently on tour.