Hyperhidrosis research: An online focus group discussion

Thanks to Paul Kamudoni for letting me know about work being done at the Welsh school of pharmacy, Cardiff University,  to develop a patient-centred instrument (measure) for assessing the quality of life of hyperhidrosis patients. He commented on an earlier post, and I have copied his note to make sure it gets some notice:

An online focus group discussion will be conducted to discuss the impact of hyperhidrosis on everyday life of patients. 

If you are interested in sharing your experiences please contact Paul Kamudoni using the following address KamudoniP@cardiff.ac.uk

Thanks again, Paul. I would like to participate if it is not too late. For those of you on the fence, this type of research is important in convincing insurance companies to cover hyperhidrosis treatments. In addition, this kind of assessment is needed so that health professionals can take the problem more seriously. Because wiping your wet palms on your pants is NOT treatment. Hyperhidrosis affects the quality of our lives.


Tiara

Iontophoresis: Delayed Treatment

As I posted two months ago, I now have a prescription for iontophoresis. Out of pocket, this unit will cost about $600-800 USD, and given all we pay for health insurance, I of course am trying to get my health insurance company to pay for it. The details are too boring and repetitive to share, but in short, I'm getting bounced between the insurance company (who tells me I have the wrong code for the device), the device manufacturer (who says I have the right code), my doctor (who says I should go through a medical device company in order to get covered), and medical device companies, whose representatives claim they have not heard of the iontophoresis unit and won't call me back as promised. Life is so hectic right now and I simply don't have the time during business hours to spend hours on the phone with all of these entities. I am going to take a vacation day just to get around to it. Or show up in person at the medical device supplier myself.

I hope I can work this out soon as I would really like to wear sandals this summer!

Sigh...

Love,
Tiara

Hyperhidrosis treatment hope?

Yesterday I went to the dermatologist for a general checkup for skin cancer prevention. It was a new dermatologist, fresh from medical school. I had previously given up on getting treatment for my hyperhidrosis. More than 10 dermatologists had informed me that they would not work with me to get an iontophoresis machine and show me how to use it. However, they would be happy to give me expensive and painful Botox injections in my hands and feet. Truthfully, I had given up on getting treatment and had resigned myself to life with sweaty palms and feet.

But the doctor yesterday agreed to try to help me get an iontophoresis unit through my health insurance provider.  She said she would draft a letter of medical necessity on my behalf.

I began to cry as I sat there on the exam table.

She said she'll get back to me in a week or two with next steps.

If you've read my previous blog posts, you'll recall that I believe iontophoresis is my best treatment option for my primary focal hyperhidrosis. Surgery is too risky. Botox is too painful and expensive -- and short-lasting.

Wish me luck!

Sharing Your Excessive Sweating (Hyperhidrosis) Stories

For several years, I have solicited and published stories by people with hyperhidrosis. I have decided to stop doing so because I feel I cannot respond to the many e-mails I receive with the care they justify. I am a full-time working mom and I simply don't have much time to respond to these personal e-mails. Instead, I wish to focus what little spare time I have on original research and reporting related to hyperhidrosis. So please stay tuned.

I am often approached by other bloggers asking me to link to them. Usually, these bloggers are selling products in such a way that I question their trustworthiness. However, there is one hyperhidrosis website that I particularly admire: no-ets.com. The site has a hyperhidrosis forum that is active and useful. As such, I encourage people to share their stories on this forum rather than e-mailing them to me. That way, you will increase your chances of receiving the support you are seeking.

I like that the website's author recommends other treatments before highly risky ETS surgery. He had ETS surgery with mixed results (he ranks his satisfaction as a 7 out of 10), and suffers from compensatory sweating, as do many other ETS patients. He is still seeking help for his excessive foot sweating, as am I.

I did not vet every single post on his website, but the ones I saw seem impartial and based on research.

Please keep following my blog, as I will continue to post.

Underarm Sweating: Is a Cure in the Works?

A medical device company recently won government approval for a device it claims stops excessive underarm sweating, according to the Wall Street Journal.

The company, Miramar Labs, Inc., seeks funding to help bring this product to the market. However, it is unclear when this might happen.

Miramar CEO told the Wall Street Journal's Dow Jones Financial Information Service that the device sailed through a recent randomized, blinded sham-control study with 120 patients, which was followed by a 510(k) approval by the Food and Drug Administration.

For more information, see the Financial Information Service article, "No Sweat For Miramar Labs; Gets Device Approval, Seeks Funding" and the Miramar Labs website.