I have been asked to give a talk at work about Fragile X and how it relates to Psychiatry.

Being back at work for the last eight months, a few times our registrars have indicated that they wanted to do a Fragile X screen on a few of the families that we had admitted. Of course my ears pricked up and I spoke to them about being a carrier, having children diagnosed and being a Child Psychiatric Nurse on the unit. They were interested. As the year progressed last year, the conversations I had were informal and on a as needs approach.

However, we have just had a change of registrars. Some come for six months and others for twelve months depending on what specialty they are studying. Some are training to become pediatricians, and others are training to become psychiatrists. This year we have a group of girls with one bloke. That bloke is going to be teased and stirred something shocking – poor guy.

I am going to focus my talk on Fragile X and it’s relationship to Autism, ADHD, OCD, Depression and Anxiety. Most of the information is in my head and half written down on paper. The power point is looking good. As part of my talk I want to include moving snippets of families thoughts on testing and having a child with Fragile X. I thought I may start off with the story by Emily Perl Kingsley – “Welcome to Holland” I don’t think this will be a story our doctors will have heard about. I also think it speaks volumes about the road we travel when we have a special needs child in our family.

I am looking at the blogs – to see if there is a story about testing and how it affected that family. It can be sad, it can be enlightening, but I don’t want it to be all doom and gloom or all happy joy joy. Life is not like that. I am on the blogs because I think I am going to read a story that will say just what I want it to say. I don’t want it to be my story. I work with these guys, they will learn my story over time.

Does anyone have any ideas or do you know someone who has written about what I have talked about above. I may choose to finish with the blog piece but I am not sure yet.



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