Tuesday, 18 March 2014

How I explain CDC to someone

I am me and I can’t change the fact that I have CDC or that I am a mosaic but I help a lot of people to understand yes that I do have CDC but I am trying to make a difference and try and get the word out.  So how do I explain to someone that I have CDC and it depends on who is asking and I what I tell them.

I start with my name because I am a human first before I tell them that I have a rare genetic syndrome.  Next I tell them that I have Cri Du Chat or Cry of the Cat or 5P- or CDC for short.  I was brought up using Cri Du Chat not 5P-.  I know in America that some parents use 5P- to explain my syndrome and that is fine by me because it is called by either name.

Next I tell them that Cri Du Chat affects my 5th chromosome and that I am missing quite a large chunk of my 5P arm and that my deletion is 13.1 and then I tell them that is where the 5P- comes from explaining the deletion and what chromosome it is located on.

Next I tell them that I am a mosaic and then I explain what a mosaic is and what percent of my blood cells are affected and then I tell them I don’t know the rest of my percentages throughout my body. 

Next I tell them how CDC affects me I explain to them that I have a slight intellectual disability, my concentration isn’t that great and I can only concentrate for certain amount of time but I need a break and do something else.  I explain about my hip how I walk with a limp and how CDC affects my speech also.  I also tell them that I get sensory overdrive if I am in a crowd of lots of people and then explain what sensory overdrive is to them also. 

I ask them if they have any questions that they may have and if they don’t we end the conversion there.  If they do I answer their questions and tell them that Google is out to date with the old information and that they need to go and look at the correct information like the support groups around the world. 

In conclusion my conversions that I have with people last for about five minutes because I have given them my story in a short amount of time and I know what information that people are looking for because I have explained it to so many people and I will always put it in my own words.

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