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Get Hyperhidrosis Out of the Closet this Holiday Season
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(November/December 2006) If you have hyperhidrosis and have been hiding it from your family or friends, we'd like to encourage you to come out of the closet with your condition and allow your loved ones to know and understand your struggles and you a little bit better. Your courage and honesty may even enable family members to share their own stories of excessive sweating. That's right if you suffer from hyperhidrosis, chances are that someone else in your family is suffering too!
Reports dating back as far as the mid 1960s have suggested that hyperhidrosis runs in families. A 2002 study from the University of California at Davis School of Medicine found that 65% of people suffering from hyperhidrosis reported family recurrence of the disorder (versus 0% family recurrence in the control group). But while this study and other anecdotal evidence seems to show that hyperhidrosis runs in families, the condition cannot truly be termed "hereditary" until its gene, or gene defect, has been identified. Geneticists at the Albert Einstein College of Medicine of Yeshiva University in New York are currently searching for that genetic source using a family-based study. A similar study is also taking place at St. Louis University in St. Louis, Missouri. Both studies are looking for hyperhidrosis sufferers and their families to participate.
To participate in the St. Louis University study, you must pay a single visit to the university. Details are provided here.
The Albert Einstein College of Medicine research study is being conducted entirely by mail and is open to anyone in the United States who suffers from hyperhidrosis or who has a blood relative who suffers from hyperhidrosis. Hundreds of individuals and 50 families have already participated, but in order for the study to be valid and useful, the investigators need approximately 200 families. They are particularly interested in hearing from multiple members of the same family, including family members who suffer from excessive sweating as well as those who do not.
It's easy to get involved. Just send an e-mail to the Research Coordinator, Betsy Vibert at bvibert@aecom.yu.edu, or call toll-free 877-444-2525, or visit this Web site: http://eph.aecom.yu.edu/web/join_project.aspx.
The study investigators will then send eligible participants a study packet. The packet includes appropriate consent forms and important information about how participants' confidentiality is protected. Also included is a relatively brief survey, detailed instructions, and a mouthwash kit to quickly and painlessly collect cell samples from the inside of the mouth to be mailed back to the investigators. All postage and mailing labels are provided. There is no cost to participate.
"This disease has such a large impact on people's lives the psychological burden is tremendous," says Betsy K. Vibert, a genetic counselor at Albert Einstein College of Medicine and Research Coordinator for the study. "But by giving us 15 minutes of their time, from the comfort of their own homes, hyperhidrosis sufferers can help advance basic scientific research which is the first step to a better therapy. Ultimately, it will help everyone involved. The more we understand hyperhidrosis' basic biology, the better equipped we'll be to prevent, diagnose, and treat it."
"When we have a better understanding of the molecular basis of hyperhidrosis," says Robert D. Burk, M.D., one of the study's investigators and a medical geneticist, pediatrician, and Professor & Vice Chair for Translational Research at Albert Einstein College of Medicine, "we'll have a specific target to aim therapy at."
Burk and Vibert expect to begin analyzing their data in 2007 and will keep study participants apprised of discoveries via mail and this newsletter. "So far," says Vibert, "25 to 50 percent of our participants indicate that members of their family also suffer from hyperhidrosis and it appears that there are two major junctures in life when one is most likely to develop the condition during early childhood or during adolescence-puberty. We don't see many people who experience their first symptoms in their 20s or 30s."
"Finding a gene for hyperhidrosis would be a high profile discovery," says Burk, "so we would hope to publish the results in a distinguished journal such as in Science, Nature, or Genetics." The investigators are also hoping to obtain a National Institutes of Health grant to continue their work.
"Medicine, and genetics in particular, are advancing quickly," says Vibert. "What used to take a generation doesn't take a generation anymore. It's within the realm of possibility that the research we're doing into the genetics of hyperhidrosis will have a practical application during our study participants' lifetimes."
"I understand that I may or may not get any help for my condition [by being a part of the study]," says one current participant. "But if I can help future sufferers of hyperhidrosis to get a cure, that would please me greatly."
Another participant says, "Both myself and my sister have been plagued with this [hyperhidrosis] most of our lives. If there is something we can do to contribute to the research to control this, we are more than willing."
To find out if you and your family members are eligible to participate in this study, visit the Clinical Trials pages on SweatHelp.org.
From our family to yours Happy Holidays! We hope that you can find the time to participate in one of these family-based research studies and help to advance understanding of hyperhidrosis as a stepping stone to a future cure. Now wouldn't that be the perfect holiday gift? |
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