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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 26-03-12, 05:19 AM   #1
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Default Wandering back, a new person.

Lets firstly start with the life I have led, chaotic to say the least. Being brought up in a family & a life of HD took its toll on me. Being a very young 15 year old, mentally & physically had its positives and negatives when approaching HD.

Yes, I know an incredible lot about the Disease, more than other teenagers did at the time. Through the message board I gained help, looked at facts and figures & worshiped the ground it stood upon. At 16, I visited HD Youth holidays, met alot of new people and spoke to incredible people. Leading a well established life naive to the fact that HD was in my family.

My Mum was tested positive but because she was non-symptomatic, I brushed this off. Grandad was now mid-stage of symptoms depending slightly on others for his own well-being but again this was the only family member and I had only heard stories of other people in the family which we hadn't been in contact with.

I wanted to get tested, adamant & contempt on the thought, non the wiser on the insurance and finance implications, I just needed to know. 16 and ready.

RCA help & family assurance which I was lucky enough to have, pushed this thought off and was guided down the route of waiting till after my GCSE's. I could write pages, articles, journals full of information, stories I have been through & journeys I have experiences, but at 18 I was still not tested.

I have 2 sisters, both older than me, both not interested in mentally involving themselves within the life of HD, I had now attended 2 AGM meetings and a youth conference, worked hard to gain public attention & awareness for the HDA through charity & publicity & then I passed my ALevels...

My family have always been open, close & loving. Just before leaving for University my Uncle Died age 51 of Cancer, My aunty (Mums Sister) had just been diagnosed HD+ (Slightly Symptomatic, very early stages, high CAG) and my sister announced after getting married she was going through testing. Difficult. Having a very large family it was hard. Even harder in my circumstances.

My sister got pregnant, I was angry. It was planned. Happy, yet confused to the decision she had made. I was uncontrollable happy when she was negative. One sister down, 1 more to go & myself. Huge amount of pressure.

University began and I stopped thinking about HD, I pushed it to the back of my mind & focused on my studies, I needed time away from the circle I had focused myself so much into my whole teenage years. I had become so involved it was all I ever thought about. First term over and my cousin & other sister had now announced to the family they were going through testing, this brought up alot of pain and sadness for me. I would be the last out of my family to not be tested. My cousins results came back and she was HD+, non-symptomatic. Yet her mother, my aunty had not been tested. This was because she was a heavy alcoholic who had been resuscitated twice after being found on two seperate occasions, 54 the eldest out of my mums brothers and sisters. She is now stable and ok (don't worry) but now lives knowing she is HD+ too.

I forgot to mention, my Mum has 2 sisters, and had 3 brothers. Both brothers were tested 2009 and both negative. Reversing this pattern my other sisters results came back negative also meaning both of my sisters were negative, amazing news. My heart sank.

My mum is now 53, still non-symptomatic which is amazing and so lucky, my Grandad is 79 and now on the verge of looking to go into care, again a whole life, amazing. With all this said, my aunty 50 is now mid-stages of symptoms and although 50 is a good age, it scares me for what my future holds.

So that is my story.

As I previously said, I was hugely involved with the HDA & HD Message board. I had alot of older friends, online friends who I had met at AGMs etc. The reason for distancing myself was not just for taking a break, going to University. I led almost a double life.

I am now 20, living a life that I am happy with, I have alot of troubles, alot to deal with, but I now face a life of uncertainty. I have double amounts to think about. I thought to myself after finishing my first year at University with a 1st Honours that I could attempt to talk to people, the friends I had made, yet to scared to what they would think of me.

I was not just pushing the burden of HD to the back of my mind but being 20, openly Gay & now living through my mums journey with Cancer.


Things just got tricky. Children, Marriage, Testing, Finance, Mortgages, Life. Being to scared to confront people on this issue, what there was for me & what peoples reactions would be to this news, yes all my Family knows, Ashlee Duffy, who I told years back was and until this point the only person who knew. I created a seperate Facebook as I had so many HDA, HD members, friends on there. Being too scared to put my thoughts across was not me. I live a life not telling people about HD and live a life telling people about being gay.

As I said we now live in a modern society, culture and I have always been open, here is to the future, for whatever it holds.

(Most of you will know me, or would of known me).
Lots of Love.
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Old 26-03-12, 08:34 PM   #2
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Default Re: Wandering back, a new person.

less of the older !!!!!!

Lots of love to you and your mum xxxxx
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Old 26-03-12, 09:01 PM   #3
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Default Re: Wandering back, a new person.

Hi Tom,

Welcome back and congrats on 1st year results.
Hope your mum is doing OK in her fight with cancer.
Life can be complicated, but make the most of it, we only have one each.
Keep up the effort at Uni.
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Old 26-03-12, 10:51 PM   #4
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Default Re: Wandering back, a new person.

Hi Tom,

It is so nice to see you back on the message board.

It sounds like things have been difficult for you in recent years. You've witnessed a lot for your age. Your mum testing, your grandad's symptoms progressing, aunts and uncle being diagnosed and tested, your uncle dying from cancer, sisters both going through testing and your mum being diagnosed with cancer. That's a lot of disruption to a person's life in a relatively short amount of time.

But look at what you have done in response: fundraising for HD, attending conferences and events, accessing the message boards at 15 (which might not seem like much, but it is very impressive to be accessing support at that age), and now you're at university and doing very well it seems. You are a credit to yourself and your family, Tom.

You've been very brave over the years and now you are being brave again by coming on here and sharing your story and your sexuality with us. Well done Tom, I hope university continues to go well for you and if you want someone to listen I am around - you know where to find me.

Good to see you posting again

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Old 27-03-12, 02:19 PM   #5
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Default Re: Wandering back, a new person.

I don't think I could of asked for a better response if I tried, I will do my best to stay in touch & see you all at the next AGM :)

P.S - I call my mum old, she is 53 ;)
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Old 27-03-12, 05:19 PM   #6
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Default Re: Wandering back, a new person.

Lovely to hear from you again. Love to you and your mum. Missed you at Telford (and playing the quiz machine game) but really happy that you are getting on with your life. Tom you are one of the loveliest people I have met and am sure the new you is equally lovely. Take care. Sarahxxx
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Old 27-03-12, 09:12 PM   #7
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Default Re: Wandering back, a new person.

Welcome back Tom. So glad you are back on here. I havent been on myself for a good while as i lost my password, so could not post but have been reading most of the posts.

You and your family are an inspiration and i hope that my leg will be ok so i can join jacqu, sarah, matt and jacqueline at the next agm.

All the best.
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Old 02-04-12, 02:52 PM   #8
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Default Re: Wandering back, a new person.

Hiya Tom

Lovely to hear from you again.

I applied for a job at a theatrical chandlers (Flints Theatrical). Sadly I didn't get it but I thought of you as I was checking out their FB page

I remember you were planning to champion HD in the arts industry. If I ever get Andrew Lloyd Webber & Co to stage my poetry I will give you the nod. Well... he did 'Cats' based on a book of poems so you never know
I tried.
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Old 16-04-12, 12:44 PM   #9
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Default Re: Wandering back, a new person.

Good to hear from you, Tom. Seems like you're having to deal with your fair share of crap that is known as "life"... and hopefully you'll be stronger for it all. I guess you have lots of choices at this stage, lots of directions you could take with your life. Doesn't matter which one you take, you'll end up somewhere

Oh, and I'm another one who has changed his nom de guerre for various reasons... you'll know me as DH...
Fetchez la vache.
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Old 16-04-12, 09:53 PM   #10
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Default Re: Wandering back, a new person.

Originally Posted by Thrive. View Post

As I said we now live in a modern society, culture and I have always been open, here is to the future, for whatever it holds.

Tom, your attitude is amazing

Nic x
Happy happy thoughts :)
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