Originally posted by jenjen:
I can't tell you how much I appreciate you asking me how I am doing. I am moved. It seems no one wants to chat with me because I am having the testing done and then deciding what I'm doing once I receive the results. I know it is a personal issue for everyone but I thought I might support on here but I guess I made everyone angry instead which was not my intent.
Thank you again for thinking of me.
Hi Jenny, I am a mum of a 17 month old son with x linked ichthyosis and although I am fully aware of the different types and how bad they are to certain extents and realise EHK is a far worse type then x linked i felt moved to post here due to what you said above.
If by making the decision to get the testing done you made everyone angry then so be it, hopefully people will come to realise that it is different for everybody and that the testing is a very personal choice. At the end of the day what may be simple for them isnt necessarily for another. I have watched over the past 17 months and struggle with my little boy and getting to terms with his diagnosis (i had not even heard of ichthyosis beforehand). Newborn babys are not the easiest of people to communicate with at times and it is made harder when they are born with any kind of condition.
I have always said that I would never have any type of genetic testing if I were to fall pregnant again BUT i think that is mainly due to the fact the results would open up a whole new world of thinking to me and I would be scared of the answers. It takes a brave woman to face up to reality and do what you are doing, and as said above it is a hard choice. As a mum it is perfectly understandable to me why you would go for the test, no mother wants their child to go through suffering and as you have EHK yourself and have watched your daughter grow up with it , it makes it harder for you knowing what you may be going into.
You could draw strength from the fact that you and your daughter have grown up with it - but then I dont want to sound patronising either as I have not experienced EHK firsthand.
I really do wish you all the best and for now I offer my congratulations until you know what the future decides - I hope this board can be as good a help and supportive to you and you find as much comfort in friends here as I have since my sons diagnosis.
All the best - and i really hope you dont mind me posting here [img]http://www.ichthyosis.com/ubb/smile.gif