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Geplaatst: 28 mar 2018, 22:18
door Naniol
Hello my name is Nicole and I’m from Germany.
We have a little son , he is 7 years old. In January this year we became the diagnosis for him.
He has a gene mutation in the ARHGEF9 Gene.
Now we search for other people who have the same gene mutation.
Greetings from Germany


Geplaatst: 05 feb 2019, 09:43
door Gabriel
Hallo Nicole,

Our daughter (10) have the same gene mutation. And we live in Germany too.
Which Problems you have? For us started only last year. Our biggest problem is the hyperekplexie.

Our daughter is always in panic because she fall out many times a day. At the moment drugs are not working.

Best regards,