My Life as a Puddle

Creating hyperhidrosis hope and awareness one drop at a time

Tag: Hyperhidrosis PFDD

Hyperhidrosis Takes Center Stage at PFDD

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.

towel-wrapped wedding bouquet

My hyperhidrosis-friendly wedding bouquet

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.

Me holding a friend’s baby and hoping to God my sweaty hands won’t cause me to drop him.

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.

hyperhidrosis and syringe safety

When you’re afraid to inject yourself with life-saving medication for fear the syringe will slip, that’s a major hyperhidrosis safety problem.

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.

Thank you.

PFDD Reflections

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.)

Lisa J. Pieretti—My Hero

I waited six years to do this.

As part of my attendance at the Patient-Focused Drug Development Meeting for Hyperhidrosis, I wanted to find a way to honor the person who has altered the trajectory of my life. That person is Lisa J. Pieretti, Executive Director and Co-Founder of the International Hyperhidrosis Society (IHhS).

For months, I had been thinking of what to do. I scoured the Internet for a glass-blown award that resembles a droplet of sweat, which I then had engraved. And because the best way I know how to express myself is through the written word, I decided to write a speech for her. Multiple handwritten drafts appeared in my journal, along with one-liners to include that woke me up in the middle of the night begging to be written down or typed into my phone. Several times during my commute to work, I would get teary-eyed envisioning the moment I would surprise Lisa with this award. Yep, I’m a total sap.

sweat droplet award

The award I had made to honor Lisa.

If someone has made a difference in your life, TELL THEM. This is what life is about—creating moments and memories. I hate public speaking; it makes me sweat even worse than I already do. But I pushed through it because this moment wasn’t about me. Here’s the video below (or watch it on YouTube) of me delivering my speech to Lisa. I was later told that most people in the room were crying, including Dr. Glaser whom I briefly mention.

My Speech

Here’s the written version of my speech.

They say our lives can change in a moment. Mine changed in April of 2011. The scene? The Brown Palace Hotel in Denver, where this woman with an adorable Pennsylvania accent stood behind a table and welcomed me to a meeting that was full of sweaty people just like me. She even shook my hand.

As I lay down on the table to receive 155 injections in my hands, Lisa locked eyes with me and told me not to worry. Dermatologists gathered around me, and for the first time in my life I wasn’t ashamed of my hyperhidrosis. Dr. Glaser reached over and patted my ankle, which was dripping wet. I could’ve cried when she did that. The act of being touched by strangers who knew exactly what I was going through was incredibly validating for me.

While I’ve always been a writer, on that day I walked in as a patient and left as a blogger with the Universe nudging me to tell my sweaty story. My blog My Life as a Puddle was born that day in Denver. Today, I stand in awe at where my sweaty stories have taken me. My intention is to create hyperhidrosis hope and awareness one drop at a time, and it’s all Lisa’s fault.

Maya Angelou once said, “I think a hero is any person really intent on making this a better place for all people.”

Lisa, you are my hero. You walk through the fire for us when our own feet are too slippery to make the trek. When our hands are too sweaty to type on our keyboards, you are the one pecking away at the keys on our behalf. So I want to say thank you, Lisa, and give you the recognition that you deserve.

Thank you for pounding the pavement when our feet are too sweaty to put on shoes. Thank you for opening doors we’d never be able to get a grip on without you. Thank you for staying up way past your bedtime and fighting for better research and treatments.

Your legacy is every single person you’ve touched. Never doubt that one committed soul can change the world. Indeed, you have.

I’m sure I speak for all of us when I say, I love you, Lisa. Our world is a better place because you’re in it. You have changed my life. On the days when you may doubt your greatness, go find one of our beloved trees. Hug it, and then look up at the leaves. Because of the roots you have planted, we are able to stretch our sweaty branches and be open to drier possibilities.

You carry the torch for us. May that flame never go out.

Maria Thomas and Lisa J. Pieretti

Me and Lisa, post-speech and tears. I’m so happy I was able to do this for her.

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