Hi everyone,

Since joining this group 3 days ago I have been checking my emails
every day. Can't believe it, we have had more messages in the last
few days than in the last few years, you must be over the moon
Linda, well done. Having read some the messages I feel that I would
like to share my perspective on a couple of points. To Rosa who is
having a probem about whether or not to tell her family about her
sons condition. Firstly everyone copes in different ways and there
isn't a right way or a wrong way it is whatever helps you to cope
the best. Personally I am an extremely open person and would have
told and still would anyone who would listen about my daughters
(maybe thats why I havn't many friends ha ha). Amy and Charlotte
however, once they came to realise felt very differently. Family
and friends were never a problem to them, but they didn't want
people who wern't directly involved to know. As they got older it
didn't bother them as much, until the ovaries became involved at the
age of 14. At this point if we were discussing their apeced they
would throw me a look to say don,t mention our ovarian failure. I
think chilren don't like to feel different. They are both now 18,
and any apprehension towards speaking openly about themselves has
gone. I feel that you are what you are and should be accepted and
loved as such. I am not sure of your reasons for not wanting to
tell your family. If it is just that you dont know how to approach
the subject, or you dont want your family to worry. On a practical
note, as you are aware this is a genetic condition and there is a
possibility that your brothers and sisters also carry the defective
gene, which they could pass on to their children and they may well
wish to know if that is the case. Also, you say that your son is
not on any meds at the moment, but if he develops addisons he
certainly will be. I feel that anyone who is likely to care for any
of our children should be told that they have addisons. As it can
be the case that what is a minor illness to others ie a cold can
quickly escalate into something more serious in someone who has
addisons and I feel that they should be aware of this to spot the
signs.

To Linda I would be very interested to see the research that you
mentioned is ongoing at Oxford University ( not sure if you mean
Oxford in England which I dont live too far from, or if there is an
Oxford in the US)

I hope that my thoughts are helpful to you in deciding how to
approach your problem and if your main concern is knowing how to
tell your family, maybe you could show them some of the emails from
this site so they could appreciate your dilema.

My thanks to you all for your input on this site, I look forward to
hearing from anyone who wants to talk and Rosa please let me know
how you get on.

Anyway I am off to the hospital shortly for yet another check up,
hope to hear from you soon

Love Karenxxx