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Temperature Research Programme

The Extreme Environments Laboratory at the University of Portsmouth have been learning from families with Ectodermal Dysplasia how living with ED affects temperature regulation. Some have already visited the lab so that we can accurately measure how hot they get when exercising.

What We Know So Far

From the information we have so far, most ED patients have some, but very limited, sweating and certainly not always enough to help cool the body.

As well as investigating sweating, we have been looking at methods to cool the body, most practical methods that can easily be performed require a good skin blood flow. In all, the people with ED we have tested have had very high skin blood flows, so we were able to suggest practical means of cooling. Immersing the hands and/or feet in cool water, or by spraying cool water over their bodies and using a fan to help cool them.

We have used these techniques with the British cycling team and also military personnel too.

We Need You!

We are keen to continue finding out more about temperature regulation in people with ED, and are still looking for people to participate in this research, and also for non-ED people to take part who are of similar build to a person we have tested with ED.

If you would like to learn more about yourself or a family member and are interested in taking part, we can either come to your home to take some basic measurements whilst you go about your normal daily activities or we can invite you to the lab in Portsmouth to take part in our more in- depth analysis.

Since the research began, we are grateful to have had a few families take part and all have reported having a great experience at the lab, having found the outcome really beneficial. Why not take a look at one of our ED families article they wrote for us to share with you all:

“We discovered that our son does sweat and is able to regulate his deep body temperature himself”

If you are interested in taking part in the study, please contact Heather Massey via email or telephone (07891432744)

Alternatively, you can get in touch with us at the Society.

If you wish to attend the laboratory in Portsmouth, you may be eligible to apply to our
Support Fund for help with your travel and accommodation expenses.