Two weeks ago, I was a featured panelist speaker at the Patient-Focused Drug Development Meeting (PFDD) for Hyperhidrosis in Washington, D.C. I am honored to be part of this landmark event. There were two panels: impact of hyperhidrosis and treatment of hyperhidrosis. I was on the impact panel and the first one to speak.
Watch my Facebook Live video I recorded minutes before the meeting began. Nothing like locking yourself in the nursing mothers’ section of the bathroom after frantically running your hands under cold water to help stop the sweating, even if it was only temporary. I hardly remember recording the video, as I was getting nervous. But all it takes is that 20 seconds of courage I talked about before. Courage is a muscle that can be strengthened, and each time you do something outside of your comfort zone, you get stronger. Maybe a little sweatier as you do it, but stronger nonetheless.
My PFDD Story
Here is the story I shared live at the meeting.
My name is Maria Thomas. Six years ago I launched my blog, My Life As A Puddle. But my story begins back in second grade. That’s the earliest I remember having an excessive sweating problem. Wiping my palms on my Catholic school uniform. Using my sleeves to hide the sweat dripping from my fingertips. Watching the edges curl up on the Big Chief tablet on which I was practicing my cursive handwriting was a scene for the books. Never wearing sandals because my feet would slip and slide all over them. Looking around to see if other kids had sweaty feet and avoided the same types of shoes I did. Remember jelly shoes? I could only wear mine with socks, and that made me feel like a dork. I didn’t want to stand out.
As humans, we are wired for touch. What happens to us psychologically when we feel unworthy of it?
Hyperhidrosis is rooted in shame. Because we can’t control our sweating, we come up with unique ways to hide it. Sweating makes us feel out of control, and many of us turn inward to wrestle with our sweat demons.
I was 36 years old before I had my first pedicure. My best friend dragged me to the salon and made me do it to get me outside of my comfort zone. When the person massaging my feet leaned over to grab the bottle of nail polish, she gently rested her hand on the top of my foot. I almost cried over such a simple gesture, because for all those years I thought a pedicure was something I could never do. I was ashamed to be touched and worried they’d discover my secret.
In an effort to clamp down on the never-ending sweaty commentary that runs rampant in my head, I developed a few life hacks for the biggest day of my life—my wedding. I was excited for my bridal debut, yet also anxious that I’d ruin my satin dress. I wore boring white ballet flats with no-show socks because I was afraid I’d break an ankle if I wore slippery high-heeled shoes. This is why people with hyperhidrosis feel like they can’t buy nice clothing and shoes. We may ruin them with sweat stains, so why bother?
And what about my wedding bouquet? About a month before my big day, I spotted a surgical towel in the exam room of my doctor’s office; it just happened to be the exact color of my wedding flowers. As I soaked through the paper on the exam table during my appointment, I bashfully asked my doctor if I could have the towel. Thank God for my crafty mother-in-law. She hand-sewed it around the handle of my bouquet. When I handed it off to my man of honor to recite my vows, it was still drenched in sweat.
A few years later, many of my friends were having babies. Driving to the hospital, my palms gripping the fabric-covered steering wheel, I tried to think of ways I could hide my sweating while still being able to hold these little bundles of joy. I was absolutely petrified that I would get them soaking wet, or worse, lose my grip and drop them. But my friends didn’t care about my sweat. They just gave me a kitchen towel to hold when I needed it.
I have an autoimmune disease called ulcerative colitis. Last year over Easter weekend, I was hospitalized because of it. When my doctor told me I had exhausted all other treatment options and would have to self-inject a biologic medication, my first thought was, How can I stab a needle into myself with sweaty hands? If my hands were to slip, I could lose a precious dose of this life-saving medication. So not only is hyperhidrosis socially, mentally and emotionally debilitating, it’s a downright safety issue for me.
Earlier this year, I tried on two separate occasions to qualify for and enroll in a clinical trial for an underarm treatment. Wearing a paper thin gown that was definitely not sweat-friendly, I was placed in a cold exam room for 30 minutes to acclimate. Then, my underarm sweat was collected on cotton pads and weighed. The first numbers came back within range, but sadly, all the times afterward did not. Then the protocol was changed, and I had a chance to re-qualify. Never have I attempted to will my body into sweating before, but in that exam room on that day, I was trying my hardest. Hyperhidrosis is not constant; it is episodic. I guarantee that I would qualify for this trial today if you were to come up here and measure my sweaty underarms right now.
We all want to be seen, to know that we matter. It takes a great deal of courage to face life with hyperhidrosis. Please don’t be disgusted when you shake our hand. Instead, admire us for having the courage to do so in what you might know as a dry world.
When an organization like the International Hyperhidrosis Society comes along and empowers us, suddenly doors like this meeting open that we never thought we could knock on in the first place. The IHhS opens doors so that we can get a grip on our future. I ask you today to please walk through these open doors to bring us better clinical trials, better treatment options, and better lives.
When it comes to drug development for hyperhidrosis, think of it this way. The IHhS built the car. And we as the patients are buckled in and ready for the journey. But it is YOU – pharmaceutical companies and industry innovators – who hold the keys to take us where we need to go.
Stay tuned for my reflections on the hyperhidrosis PFDD. There were so many moving parts and details that made this event come to life. I can’t wait to share them with you, as well as a few stories about some of the people I met. (Don’t worry – I will respect your privacy and not use names or photos without your permission.)