If the Gene Fits

Over the past six years, a research team at the Albert Einstein College of Medicine in New York, and led by medical geneticist Dr. Robert D. Burk, has collected DNA from 1,500 people and 300 families plagued by excessive sweating. Most of these DNA samples have been sent by mail, from people just like you, who collected their own DNA simply by using Scope mouthwash, spitting it into a container, and sending it to the Albert Einstein College of Medicine in a stamped self-addressed envelope (provided to them by the research team). Who knew that working together to improve scientific understanding of hyperhidrosis would be so easy? "Our patients are from all over the U.S.," says Betsy Vibert, genetic counselor and research coordinator. "Children are involved, as you may know, some hyperhidrosis sufferers are symptomatic at birth, and others become symptomatic in early childhood or at puberty. Basically, the children have to be old enough to swish the mouthwash and spit it into a small container. We have participants of all ages, I believe one is even 100!"

But why look for more than six years and all over the nation for a hyperhidrosis gene? Simply put, on a practical level, if the gene or genes responsible for excessive sweating can be identified, scientists may be able to find a way to control or even cure the condition.

On an intellectual level, while data suggests that as many as 65% of individuals with hyperhidrosis have family members who are also affected, the genetic component to hyperhidrosis has yet to be scientifically proven by a statistically large enough sample. The Einstein team - gathering just the right number and the right kind of patients � could result in a large enough sample to finally prove that, yes, hyperhidrosis is a genetic condition.

And while the hyperhidrosis gene remains elusive now, Dr. Burk has said that the data so far indicates that: "In many families, the anatomic area affected by excessive sweating tends to be consistent. For example, some families have mainly palmar/plantar sweating, while others have primarily facial symptoms." This development has led the research team to believe that they need to continue to expand recruitment efforts. "It may be necessary to group families by the anatomic region(s) affected by excessive sweating for analytic purposes and to obtain statistically significant results."

The researchers are particularly interested in families with multiple affected generations and multiple affected siblings who are willing to participate because it�s easier to trace a potential "hyperhidrosis" gene through these types of families. That said, the researchers are also interested in families that aren�t as extensively affected by hyperhidrosis. "Certainly, if somebody participates in our study, they don't get anything immediate from it," says Dr. Burk. "They don't get paid. They don't get cured right away or get treatments. But what they're doing for medical science is immeasurable. And in the end, they may very well help themselves."

"I think it is fair to say that the majority of our patients heard about us through the IHHS [International Hyperhidrosis Society] or through a family member who heard about us through the IHHS," says Dr. Burk. "The more people participate, the faster we're going to get an answer."

Thank you SweatSolutions readers and SweatHelp.org visitors for helping make this important research possible! Without your willingness to send in DNA samples, researchers would not be able to get enough participants to work on this important genetic study.

If you have not yet participated in the Genetics of Hyperhidrosis Study and would like to help improve the understanding and treatment of hyperhidrosis, the first step is to answer the following questions:

• Has a doctor ever told you that you have hyperhidrosis?
• Do you experience excessive sweating when you are not overheated or in an anxious state?
• Do you experience a sudden increase in the amount of sweat from your hands or feet when stressed?
• When you walk barefoot, do you leave puddles on the floor?
• Do you have any immediate biological relatives who have been diagnosed with hyperhidrosis?

If you answered "yes" to any of these questions (and you live in the U.S.) you are probably eligible to participate in this study. If you are eligible, you'll be asked to fill out a HIPAA form and an informed consent. You'll also complete a medical and family history.

The DNA sample will come from Buccal cells in your mouth. You collect the cells by rinsing your mouth with Scope mouthwash and spitting into a small container. Kits are sent through the mail and a stamped, self-addressed envelope is provided for the return of the study materials.

Contact the research coordinator for the Genetics of Hyperhidrosis Study at ghs@einstein.yu.edu or 1-877-444-2525 to learn more or to request a kit. Additional information is also available on the Clinical and Market Research page of our IHHS Web site.

Stay current on all of the scientific research in the hyperhidrosis field by visiting our Clinical and Market Research page.

Physicians and clinicians: if you are working on clinical trials, SweatHelp.org is a great resource for recruiting patients! Email us at info@SweatHelp.org to get started.