HD Australia

So I have made a few posts on this fantastic forum but I have not actually introduced myself. Daisy is my forum name and my husband I call the Rock. We found out February 2009 that Rock's mum was confirmed as being gene positive for HD. We had suspected it for many years but she refused to be diagnosed until that point. After finding out her results and it was the right time in our lives to start a family we wanted to make an informed choice as to whether to have a child or not and all our options.

So we started the process and nothing can prepare you for it all. We felt really nervous but kept a positive look on everything until we got the results. The only problem I can see now looking back on it all was I in particular had a long way to fall when the results came back positive. My Rock had prepared himself better though it all still was a shock and took time to adjust and we still are adjusting. We got those results in early July just days before our 2nd wedding anniversary to say it was a quiet non event is an understatement. We both fell very ill with the flu and spent many days and nights in bed crying and sleeping and trying to come to terms with it all.

Then after taking time to process things it was time for me to go and be tested. All we knew about HD in my family was that my Great Aunt(my dads aunty) has HD though she only has a repeat of 39 so it is late onset of symptoms. My father has been going though chemo for cancer since October 09 so he was not going to be tested for HD while he has been dealing with his illness. At first he was refusing to be tested at all though now at least my mum and I have convinced him to get well then be tested.

I am from a large family with 5 siblings and 7 nieces and nephews so if only he can get tested it could have a great impact either way. My Rock and I decided not to wait for him and with their blessing I started the testing process. To say it is a long process is an understatement it is not due to the great staff it is just the public health system and how busy they are.

It is a VERY different experience being the person being tested versus being the support person. I could NEVER have realized this except for now having gone through both sides. We decided that we didn't need a second or different support person and went into it together having swapped roles and seats. I got the call last Thursday that my results were in and they could fit me in very luckily the next day. I was sick from that point on I couldn't eat or think or function very well it just overcame me with grief and stress.

I do not carry the repeat gene and now we can continue down the path of IVF that we have started. We have had loads of bloods taken and tests done to get us the best possible chance of having a HD free baby. We go next month to get back all the results and hope from there we can just start when we are ready.

I have been wondering for days whether to write this or not but I figured that this site helped me so much when my Rock was diagnosed that I felt I owed it to everyone who is either a long term poster a reader or someone who may read this in times to come. I am not here to say yay I am HD free or poo we have HD in our lives I just felt that sharing helps both the writer and reader so that is our story.

Daisy.

Hi Daisy - I am so pleased that you don't carry the HD gene - it must be such a relief for you, and also pleased that you shared your story with us.

I know what you mean - that nothing can prepare you for the journey of testing, getting results etc. It was interesting to hear your unique experience of being the support person, and then the person being tested.

It's all so much to take in, especially when the whole HD topic is new in a family - then everything seems to start careering out of control, especially when results are given which you didn't want to hear. Your mind kind of freezes for a bit, before you can start processing, very slowly over time, all (or some of) the implications.

In 2006 when I tested positive, and my 2 children (now late 20s) were later tested I was their support person when they got their results. My son got his first - I didn't understand when they said he had a HD gene - but it wasn't mine (I thought my HD negative gene must have increased into the HD repeat range in my son). They kept saying it wasn't that. The penny dropped when my daughter got her results later the same day. She had my HD gene and also a HD gene from her father (we didn't know about HD in his side of the family at all - only found out about it in my family in early 2006). So then it made sense - my son had his father's HD gene - all of this was totally out of left field.

I hope you continue to post, Daisy, and let us know how you progress with your lives and the IVF - it seems a few people on the forum are at various stages of this PGD IVF journey. I know I am keen to find out as much as possible, especially if my children decide to become parents (and make me a grandparent - yay! - it's very hard when other people who know nothing about HD in our family ask me when my children are going to start having a family, or when people are happily talking about their grandchildren and showing photos, I must admit I feel left out).

All the best to you, Daisy, and your Rock. Once again a big thank you for posting and sharing your unique view as both support person and person being tested.

Take care,
sonnie

Daisy thankyou for sharing your story...i know its not always easy to do, but your story will touch someone, possibly many people, who are out there going through similar situations. So thankyou for being brave and posting.

Id love to hear more about  some of your experiences in sitting on both sides of testing...i think thats a very unique situation to be in and im sure you have gained many insights from this!

Im glad you guys can move forward now into the next phase of your journey with IVF PGD. Testing can be exhausting...i cant imagine going through it twice in such a short period of time.

I know there are alot of people looking at the IVF option, so if you ever come across any info you think may be helpful to others on the forum, please feel free to post it up

Its great to have you on board here

Michelle x