Friday, 26 August 2016

Being 25 And Having Fragile X

I've posted 3 posts about Fragile x and it's really hard because I never know what to write as I've covered most in my other posts and while I like sharing my experiences,thoughts and issues trying to write about it gets difficult.I asked for help from Becky who is the CEO at the Fragile x society she sent me questions I could use to write this post so thank you Becky!. I've probably mentioned the same things as to what I've written before but I just wanted to wrtie about it again as it's a part of me and I like to know I'm helping others in someway.

Being Tested.
I was 8 years old when I was tested back in March/April 1997/1998 I don't know how they came to getting me tested for Fragile X anyway I had a MRI scan that showed normal I moved about a lot which probably didn't help! the blood test came back as normal and the letter saids I am Fragile X positive which means approximately 10% of the cells are positive for Fragile X. I was at primary school at the time and had a difficult time there I was behind on my work,hit the other kids.My mum has a letter that I damaged a ball in PE and would miss out of playtime (don't recall this) school was hard for me I didn't have many or any friends. I found the work hard and was always behind my parents thought I was either Dyslexic or had dyspraxia.

What Is Fragile X?
Fragile x syndrome is a genetic condition it is the most common known cause of inherited learning disabilities. It affects around 1 in 4000 boys and men, as well as 1 in 6000 girls and women.Fragile x is a gene that causes fragile x syndrome is found at the end of the x chromosome and shows as fragile site on the chromosome when viewed microscopically.It looks as though it is breaking off but its not quite separated it is this fragile site on the chromosome that gives its name to the syndrome. Learning disabilities occur in almost all boys with fragile X, to differing degrees and some boys have severe learning disabilities although this is rare. It effects girls differently they usually have milder learning disabilities than boys but this is not always the case. Some girls with Fragile X Syndrome may be clinically unaffected.My grandad had it (who's sadly passed away) my mum is a carrier and passed it to me.

Trying To Explain My Disability.
I'm 25 now and I was diagnosed with Fragile x at 8 I'm aware I don't look like I have a disability and explaining what Fragile x is to people is difficult when most haven't heard of it.When I meet people I avoid eye contact,get anxiety/worried when dealing with issues such as interviews etc. I'm also not the most sociable person either and I'm not a fan of parties I feel awkward and out of place and plus I don't drink #yucky. when I do try and explain it people don't understand which is difficult sometimes it's not the seaside thing to explain. When I first meet people I'm shy,quiet and withdrawn and find it hard to engage with people/make conversation.

School/College.
I hated school as well it wasn't my best time at all I was bullied and I just found it difficult especially maths and most other subjects. I didn't have a lot of friends either to be honest no one really wanted to be my friend and so I was just left out and lonely. I got picked on a lot by this girl called Lisa who called me troll and I just took it and did nothing about being bullied. If I did tell the teachers it never got sorted and they were all useless anyway I was SO glad when I left. I liked college I did a few courses to help with employment (weren't much help) and a computer course I made friends on all but unfortunately they aren't my friends now.I find it hard to concentrate as well I fiddle,I look around the room,play with my hands or bite my nails.I'm quite sensitive and I get upset easily or I am a lot more moody when it's my time of the month :( which is the most annoying thing ever. I have been told I have a good sense of humour and a lot people say I'm funny and quirky.

Things I've Overcome.
I have been volunteering at Each for 5 years now and it's made a real difference to me I have gained more confidence and become less shy. I am now able to talk to customers,help them and I've made new friends and we have a laugh. When I first started (back in November 2010) I wanted to quit I felt so out of place,awkward I didn't really know what to do and I just kept myself to myself. I overcome my issues and fears and I stuck at it and while I am glad it wasn't plan to stay for 5 years!. I recommend volunteering in a charity shop at first it's daunting but you'll make new friends,learn new skills and gain experience and it also looks good on your CV. I have gained more experience and confidence since being unemployed and going to interviews but I still need a job which is frustrating but I am trying to believe in myself.

Thanks for reading and if you are affected by Fragile x or know someone who is then leave a comment :)




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