Being able to talk to other people with Kallmann syndrome and hypogonadotrophic hypogonadism makes a lot of difference to how a person copes with having the condition.
Since the condition is so rare and it involves an area which is difficult to talk about people with KS can feel very isolated and feel like they are the only person with the condition.
The ability to contact, talk to and meet other people with the condition is almost always a very worthwhile exercise.
There are 2 groups on Facebook where you can contact other people.
One is called "Kallmann's syndromers". It is an open group where you can post comments and ask questions. There is also a chat option to talk to other members. Other people on your Facebook profile will see you are a member of this group.
http://www.facebook.com/#!/groups/114162694465
If you wish to remain totally anonymous there is an also a private, "secret" KS group on Facebook which is only visible to members and people can post and chat in the knowledge that only people in the group can see the posts in the groups. Nobody on your profile will see that you are a member of the group. You can gain entry to the group by asking one of the current members to let you in, or send me an e-mail.
There is also a contact group on Yahoo containing some members very knowledgeable on KS.
http://health.groups.yahoo.com/group/kallmanns-syndrome
I am always happy to hear from new people and will try to pass on contact details if other people want to get in touch.
neilsmith38@hotmail.com
Since the condition is so rare and it involves an area which is difficult to talk about people with KS can feel very isolated and feel like they are the only person with the condition.
The ability to contact, talk to and meet other people with the condition is almost always a very worthwhile exercise.
There are 2 groups on Facebook where you can contact other people.
One is called "Kallmann's syndromers". It is an open group where you can post comments and ask questions. There is also a chat option to talk to other members. Other people on your Facebook profile will see you are a member of this group.
http://www.facebook.com/#!/groups/114162694465
If you wish to remain totally anonymous there is an also a private, "secret" KS group on Facebook which is only visible to members and people can post and chat in the knowledge that only people in the group can see the posts in the groups. Nobody on your profile will see that you are a member of the group. You can gain entry to the group by asking one of the current members to let you in, or send me an e-mail.
There is also a contact group on Yahoo containing some members very knowledgeable on KS.
http://health.groups.yahoo.com/group/kallmanns-syndrome
I am always happy to hear from new people and will try to pass on contact details if other people want to get in touch.
neilsmith38@hotmail.com
1 comment:
HI NEIL,My name is TONY,I will be 76 in JUNE.I have written other place,s to find a person that has started testosterone late in life,I had given up until I went in for kidney removable,after operation to doctor,s came into my asked my name I was so scared I couldn,t imagen what else was wrong,that,s when they told me I had K S and injection,s will help,I was 50 year,s old.
I,ve written a story about it titled
A 50 YEAR OLD MAN IN 12 YEAR OLD BODY,at kallmannsyndrome.org
I sure would like to talk about the difficultes starting that late.
THANK YOU TONY
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