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Normal sweating - thats what we wish for our children

Aichtal, Germany

Sweating and having teeth is quite normal. A "rare disease" leads to people not being able to sweat. A drug study is currently at risk if we do not make enough money for funding.

T. Bantzhaff from Selbsthilfegruppe Ektodermale Dysplasie e.V. | 
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About this project

To sweat and to have teeth is actually quite normal. Almost. There is a so-called "Rare Disease" which leads to the fact that affected people can not sweat and have almost no teeth. The hair growth is also impaired. This genetic defect is called "ectodermal dysplasia". This disease is congenital and has not yet been cured. However, research has found a way to compensate this genetic defect. The medication ER004 (former Edi200) is a protein that the body normally forms itself. Ectodysplasin-A1 (EDA-A1) is missing in the affected person, so that the body does not form sweat glands when growing in the mother's womb and also the teeth and hair do not grow properly. The development of drugs is very expensive, time and labor intensive. There is an ongoing study whether and how the drug works, but the funding is endangered and not safe. However, this study is absolutely essential and necessary for a drug to be approved. If we do not make enough money to finance the study, almost all previous efforts and hopes were in vain, because then the drug will not be allowed and will not help future affected children. Therefore I would like to ask for your help and your donation that we can successfully complete the study. 

The success of the drug is so far very promising. The twins Maarten and Linus were treated with ER004  in the mother's womb. ER004 was given to the nutrient of the mother. The gene defect has been largely remedied. Normally, affected ones can not sweat as described above. Maarten and Linus have shown in a sweating test that they can sweat like normal children. The parents are very happy. We hope now that the drug can be approved and so can help other affected children.

Apart from not sweating, the missing teeth are also a big problem. Even children need dentures and later implants. A tooth register is needed and to be set up. Also this needs money.

Furthermore, a vocal cord examination and a study of the hormone situation in affected women is urgently needed to learn more about this disease and to achieve many possible improvements for all those affected. These donations are also for all these studies.

Are you interested in further details? You are also welcome to come directly to me if you have any questions.

See also...:
Updated at 18. March 2020

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