# Newbie: Huntington's gene, TFMR now IVF PGD



## Pollypanda (Feb 12, 2015)

Hello to everyone here,

Firstly, I wanted to say thanks to everyone for generously sharing their stories. Reading your experiences has made me feel less alone and it’s comforting to know that you’ll all understand how difficult the journey to have a baby can be.

To give some background, my husband tested positive for a genetic disorder called Huntington's disease in 2011. Easiest way to describe it is that it is similar to Parkinson's but with added dementia, and can start at any age. There is no cure, only symptom management, although there are some potentially promising developments in gene-silencing. My husband is not symptomatic yet, and hopefully will not be for at least another ten years, but his father is and we know what hard road is coming.

He tested because we wanted to start a family and do not want to pass the gene on. It is a 1 in 2 or 50/50 chance that any baby of ours will inherit the gene. Really rubbish odds which seem impossible to overcome on my bad days.

The positive result was upsetting for both of us and for me the news brought unresolved grief, sadness and anger from my past to the surface (in an nutshell, my mother died from cancer when I was ten and there have been family issues since). It took another two years plus a lot of difficult conversations and counselling before we felt like we were ready to start our family. 

After discussions with our genetic counselor, we decided to try the CVS testing route. I fell pregnant quickly, but the CVS test showed our baby, a little girl, had inherited the Huntington’s gene and with much heartbreak and sadness we ended the pregnancy. 

That was just over a year and a half ago, and it's only now we feel ready to try again. The CVS path is too painful for us to attempt again, so we're going to try IVF PGD. We've been referred to the Centre for Reproductive & Genetic Health in London who have been in contact and we will hopefully kick off our first appointment soon. We live in London so it's not a long way to go for treatment.

One of our challenges is that all our family is back home in Australia. We both go through phases of wanting our family close whilst we go through this, but we're in the medical system over here and returning home to start IVF PGD treatment will add further delay. As I'm soon to turn 37 time is definitely a factor for us.

I can't think of anything else to say, apart from it's nice to meet you all


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## Dory10 (Aug 6, 2013)

Hi Pollypanda

Welcome to FF  . I'm really sorry for the loss of your little girl, a truly heartbreaking experience for you both and it's no surprise it's taken you time before thinking about trying again. Here are links to a few threads on here I think you'll find useful, I was going to forward your post straight to the PGD boards but I think the trying again after loss section and the London regional boards would be helpful too, especially as your family is so far away.

*PGD Section* http://www.fertilityfriends.co.uk/forum/index.php?board=534.0

*Pregnancy Loss and trying again threads* http://www.fertilityfriends.co.uk/forum/index.php?board=12.0

*London Threads * http://www.fertilityfriends.co.uk/forum/index.php?board=345.0

Good Luck 

Dory
xxx


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## Pollypanda (Feb 12, 2015)

Thanks Dory10, thats very kind. I will check out the threads you mentioned


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## DollyBlueBags (Aug 5, 2014)

Hiya,

Reading your post made me cry.....

I work in the NHS and a few years ago I worked with Huntington disease patients. I was 23 and was pared up with a 25 year old female juvenile HD patient.

I was her carer, I took her shopping, to the cinema, out for lunch ect...it was my job to make her life the best it could be. She chose to be sterilised as a young teenager, she said she would never want any child of hers to live the life that she has. 

I think you are very brave and if I was faced with the same situation I too would have done exactly the same thing knowing what I do about the disease. 

I really wish you good luck for the future,

X


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