I wanted to share some exciting news!
Today I was featured in an article in the International Hyperhidrosis Society eNewsletter! Sharing my HH story with others has been a really rewarding experience and I thank the International Hyperhidrosis Society for giving me the opportunity to share with so many of you!
Please click HERE to read the article.
The International Hyperhidrosis Society is a fantastic support site for people with Hyperhidrosis. They share a wealth of information including HH education, tips for coping, stories from others with HH, deals and discounts on sweat-helping products, research studies, treatment information, a comprehensive search for doctors, ways to get involved and more! I have had a really positive experience communicating with them in preparation for this article and always find their website helpful. Please check it out!
All best, and stay tuned for an entry about the Iontophoresis machine that was just donated to me from R.A. Fischer iontophoresis devices !
14 thoughts on “I was featured by the International Hyperhidrosis Society!”
I just read your story in the International Hyperhidrosis Society newsletter. I am encouraged by your success and happy that you are following your dreams.
I also suffer from palmar and plantar hyperhidrosis. I played saxophone in high school, and I often wish that I could have done so without worrying about my hands sweating. I felt like I never reached my full potential. During those rare moments when my hands were dry, I felt like I was on top of the world.
In the past few years I have had tremendous success with iontophoresis treatment. I have to do it basically every day, which is kind of a pain, but it’s obviously better than the alternative. It has changed my life.
I wish you luck in your search for relief.
Hi Samuel! Thanks for your comment!
I hear ya- dry hands are good for being able to move your fingers fast for instruments like Saxophone and Flute! This may seem strange, but did you ever feel like your hands were too dry when playing? Maybe I’ve just gotten used to playing with wet hands that whenever my hands are dry, I have to blow warm air on them to make them a little clammy. I almost feel like I get better traction when my hands are just a little wet (not dripping wet). Weird, I know! I’m so glad that you have had success with the Iontophoresis machine! I’m eager to start the treatment!
I found your blog through this and I am SO beyond excited you have no clue!!! I do not know anyone with hyperhidrosis! not to sound like a stalker but we totally need to be friends!
I’ve been thinking about writing my journey on my blog. And because of you I think I will!
I’ll give you my short story. I was finally diagnosed with HH right before I turned 18. I’m a musician as well, and at that time had dreams of becoming a concert pianist. You can imagine how well that was going to work with my hands. I would have to take two towels with me to Piano lessons.
A few months after i turned 18 in 2000 I have the ETS surgery. At that point there were only a few dr’s in the nation that were doing it. It was a horrible surgery and horrible recovery.
BUT I came out of it with dry hands! and dry feet!!!!
It was fabulous! for 6 years.
in the fall of that 6th year i started having compensative sweating. now my back, stomach, and legs all sweat. I’ve traded one thing for another. it’s hard in a different way. i don’t sweat all of the time. and it is much easier to cover the sweating. But it sucks. i can’t wear khakis or any light fabric pant, skirt, or short, because the sweat stains will show.
My hands have never started sweating again. it only happens when i have the flu and am throwing up. it’s weird that i spent 18 years of my life dealing with this every day and now i forget about my hands.
my feet have started sweating again but nowhere near what they did before surgery. i can wear sandals, but they need to be fabric covered or have a shoe insert on them.
i’m leaving the longest comment ever! i’m sorry! just so excited to find someone else!
Thank you for your comment! I’m so glad you’re excited about my blog! You should definitely start writing about your own journey too!
We all have things to say about HH and have our own tips and tricks for coping. Please share!
Your surgery must have been really scary. I’m glad that you were okay, and that you were dry for 6 years. However, it must have been devastating when you started having compensatory sweating.
I also stay away from khakis or light fabric pants. It’s awful 😦
Glad to find another HH sufferer to share stories with!
Surgery was terrible. I wouldn’t wish it on anyone. I think the worst part was the chest tubes. Because they had to collapse each lung to get to my nerve. So I had chest tubes in after that were literally the same size as a garden hose. Removing them was horrific. I will never forget the look on my Mom’s face and how she had tears running down her cheeks because she could tell the horrible pain I was in.
That being said. I think I would do it again. not having to worry about my hands. is. huge. do you know i actually have to use hand lotion now? never before! but now my hands are very dry! Even thought I have to deal with the compensative sweating, it’s not non stop. i can go a good portion of the day not sweating, especially if i have fans on me. having the surgery, although it had drawbacks, has allowed me to feel more normal.
I was the asst. choir director at my church and directed a performance 2-3 weeks post surgery, it was a little difficult since i couldn’t fully raise my arms, but the strangest thing was that my hands were so dry i had issues turning the pages! even now sometimes i have to lick my fingers to turn a page. so weird.
Random, but do you have issues when you paint your nails? your polish taking hours to dry? mine always took almost 3 hours to dry before my surgery. after my surgery i painted them and was SHOCKED. they were dry in 20 mins. i never realized that sweaty hands affected that!
Your experience with the surgery sounds really scary!! I’m so glad the results were successful though!
Thank you for sharing your experience with me. It’s funny how you say now you have trouble turning pages. I guess sweaty hands are good for something, right?!
I actually have never noticed a problem with nailpolish drying. That’s really interesting! I do, however, have an awful time at manicures!! I’ve had other people with HH shocked that I sometimes put myself through that torture!
Wow..this is the first time I am hearing about a person who was brave enough to go for surgery and face the compensatory sweating.
I’m nineteen and I suffer from HH too, iontophoresis hasn’t worked for me and I’m too scared to try surgery. So, I’d love to hear more about the compensatory sweating. The clothes wont make a difference, because my dressing is highly compensated on. I don’t usually wear khakhi or shorts or short-skirts or pretty footwear anyhow..unless I have socks on my feet
Do tell us some more on your experiences 🙂
Or me, I’d love to hear more – my email id is :
Hi Caryn! I commented on one of your blogs earlier today after reading that eNewsletter but just wanted to say I love all that you are doing and it’s great to hear of others with similar struggles. I mainly have palmar and plantar HH. I’m still only 18 so I have been skeptical about trying more drastic treatments but I’ll be interested to see how the iontophoresis device works for you. I’m always glad to hear other people’s stories because then I know someone out there understands it! “It” as in just how sucky HH is, and I feel that’s the best description of this condition. As dumb as that sounds it’s perfect because it is impossible to explain to people how much of an impact HH really has on your daily life and then having little options of treatment is just more of a bummer! Hopefully one day there will be something that ACTUALLY helps (and isn’t super risky!!) (:
Thanks for your comment! I totally understand about being skeptical about the more drastic treatments. I am the same way! I’ll let you know about the Iontophoresis machine. I’ll be starting that process soon and will document my progress on my blog.
I know that HH sucks, but you just have to be proud about everything you are able to overcome! HH has also made me a more patient, understanding and tolerant person. I would never give those qualities up!
Here’s to hoping for a less risky cure!
You are so brave and an inspiration to me. I have lived in hiding with HH for as long as I can remember. I’m a few weeks shy of 36 years old. Yikes! That’s a long time to feel ashamed, nervous and embarrassed. I loved the flute. I played it for 7 years and finally just gave up because my flute was getting rusty and the pads were constantly sticking because of my hands. I wasn’t brave enough to get past the sweat running down my arms and dripping in the floor. I only lasted in piano lessons for a short time. The puddles on the keys was just too embarrassing. You’ve got me thinking that it would be amazing to just live. To stop hiding from social situations. It’s baby steps for me. I told a friend about my HH recently.. One if only maybe 4 people I have ever told and the others were family.
Thank you for being so brave and sharing your experiences. It helps to know I’m not alone.
I would love to try one of those machines! Maybe someday I’ll luck out… 🙂
Good luck!! Hugs!
Thanks for your comment and kind words. Believe me, it’s baby steps for me too! I’m always scared to tell people about my HH. However, afterwards, I can breathe easier. I remember the day I told my quintet members- only a few months ago!! Now, at rehearsals, I don’t have to hid my towel anymore. It’s a great feeling.
I’m sorry you gave up the flute. HH is definitely doing it’s worst to my flute. The pads are sticking, like you said. I actually have a big problem with the rods on my right hand gunking up with rust- making the right hand mechanism very slow. I have to get it fixed every few months. I remember a few scary times my flute decided to rust up. One being the day before I was playing a concerto with an orchestra!
Piano would never have worked for me. I took 2 years of it in college for a class (music school). The sweat just had no where to go. The sweat would pile up. The worst part about this was that everyone in the class shared the piano, so the student after me had to sit at the sweaty keys! Really embarrassing.
Telling people about HH takes courage, but I receive courage in knowing that I am helping others with HH indirectly. Every person we educate, is one more person out there with understanding. Sometimes when I tell a person about my HH, they immediately say that they think they know someone else with HH but never knew what it was. One day, maybe HH will be a common name and people will know what it is!
Check my blog for updates with the Iontophoresis machine- hoping it works!
Caryn, I subscribe to the IHHS newsletter and found your blog through them. I must say I love love love your blog. I sympathize with everything you write and it’s comforting to read about your situations because I have had them all too. It makes me feel less one with HH. Your fiancé sounds like my wife. Super supporting. I am going to try to have my wife read your entries. After 10 years together it seems like she still doesn’t know how much it affects me life. (I might hide it too much I think). But the way you explain things is so perfect. Keep it up. Just know you are an inspiration. I might even try to tell some people about my condition like you have so bravely done.
Thank you so much for your kind words!
I’m so happy that your wife is supportive of your HH. I feel like I get a lot of questions from readers about relationships because some people with HH fear that no one would understand their condition. You are another example of proof that having HH will not hinder your relationships in the long run. Yes, the beginning stages of a relationship can be tricky- holding hands and having the HH discussion. But there are people out there who are loving and understanding and will love you for who you are as a person.
Francis is so supportive, and like you said, even after all this time together, he is still learning new ways that HH impacts my life. Sometimes I feel there is a never-ending list.
Thanks again for reading, and please share your condition if you can. I get courage in knowing that every person I tell, is one more person with HH awareness. Not just about me, but about HH in general. We should all share to help other people with our condition and ultimately create universal awareness. I know it’s scary…start with people you care about the most.
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