HD Australia

Hi Guys

Matthew is thinking very seriously about getting tested soon. This is for a lot of reasons but mainly due to our decisions around having children. Although matt hasn't signed up he looks over my shoulder a lot when I'm on here. It would be great if people could give Matt some insight into decisions around getting tested - and if positive, decisions around having children (I know there is another thread around hd positive and children which i will show matt). Any input would be great.

Love Katie

Hey Katie...im glad matt is looking over your shoulder...tell him we dont bite Just talk!...lol...that might be scary enough though! lol

It is a big decision for you guys to make getting tested...I was thinking though that having children with hd in the family is just as big a decison...as it effects other people as well....I imagine that if you are going to go through the IVF process you would want to know for sure Matt had the gene. It would help you to make an informed decisions and plan for your future. As i guess IVF is great however it still leaves you with the responsabilty of having kids and a partner with hd to care for...and the big decisions and issues which can arise out of that.

The other possablitiy would be that he doesnt have it and you guys can have 6 kids and be free from this burden! now that would be cool!

Just a few questions i was curious about and you dont have to answer them...Have you guys ever had any counseling in regards to this stuff? and Do they have much support in tasmania for people with HD?

well katie these are just my thoughts...I guess at the end of the day you want to make decisions which are right for you guys...i know im always telling my brothers to hurry up if they are going to have kids as it scares me that they are going to have little kids and get sick....and this is coming from someone who has had four kids and not be tested...so im no great example at all this stuff!

Talk soon
Love Michelle

we haven't had any counselling as of yet but I imagine once we start the testing process we will have to. I emailed the Tasmanian association yesterday and gave them a bit of an outline of our situation....hopefully they will get back to me and let me know what sort of services they can offer hd families....the problem there is the Tas association is located in the NW of the state....about 3.5 hours drive from Hobart. There is a social worker in Hobart who deals with hd though so we will make contact with her.

In relation to PGD IVF it would be really interesting to know how your younger brother is going with all of that....I know a little bit about it but no real specifics around cost and time....speaking of your brothers, I noticed that they're all very talented musicians....I checked out the website a couple of days ago.

Anyway, I better get back to work I suppose

Katie

Hey Katie

You have to give Matt credit for thinking about testing.My husband went through testing a year ago.
We had a daughter before Glenn was tested,so it made it harder cause if he came back positive then we are back to the start with her 50/50 chance.If you get what I mean?
All I can say is try & get to speak to a social worker,we seen one before testing & she was so helpful.She wasnt pushy about testing,about us having another baby without testing.She answered all our questions.They will be helpful for you on information about PGD IVF.

Julie

yeah they are very talented katie...i somehow missed all the good stuff...lol

Hopefully Geoff will write something here soon...ill give him a little kick up the but...lol...i know you can claim something like 70% back of the costs through medicare and that its a rather long process...but ill get geoff to tell you a bit more...or ill ask him some more details

Its great you guys are looking for the supports you may need...thats wonderful. I hope the asscoaiton gets back to you with some helpful information which may help you on this journey

Take care katie...love michelle

Hi Katie,

Unfortunately im not very cluey with this part. I went to an IVF meeting once before i found out my results and although i think i was way too young to be attending, i thought it was a fantastic way for people to have a childre without passing on the HD gene. I guess it is a very expensive proceedure and if Matt found out he didnt have it then you could go ahead and if it came back possitive than go with the IVF, dont hold out on something that you really want in life because everyone deserves happiness:)

I guess i just really wanted to say Hi and see how everything is going with you and Matt???

Love Nay
xxxxxx

Thanks everyone for all of your input.  Matt and I have an appointment with our GP on Monday to let him know what's going on and that we want to start the ball rolling on testing - from there i guess we will have an appointment with the social worker.  How long does the testing process usually take?
Anyway, i'll keep everyone posted on all the goings on and what's sure to be an emotional rollercoaster

Katie

hey katie...thats great you guys seem to have made some decisions. I think the whole process took a good 6 months but that was because i had to try and get insurance (which i dont need now!!. ..lol...but that all had to be sorted before i even started)...so if you have all that kind of stuff in place i would think anywhere between 6 weeks to 6 months...depending on how fast you wont to go...

With the IVF it seems that you should also get private health insurance and you need to pay into that for 12 months before you can use it for the process. So that might be something else to look in to.  

I hope it all goes well at your visit to the docter!!

Love Michelle

Thanks Michelle

I organised private health insurance last month, so we still have 11 months before we can start any IVF processes.

We've also just sent off insurance papers and we're still waiting to hear back, so we won't do any testing until that's all finalised.

Hi Everyone

Well Matt and I had a chat with the GP on Monday afternoon, which made everything very real.  Matt told the doc that he's convinced that he has the gene and while he tried to help matt see the other 50 percent, he wouldn't budge.  Luckily for us, our gp does no a little about huntingtons - especially in relation to how the suppliments may be benificial.

We have now made an appointment to see the social worker next Wednesday, who has also arranged a geneticist to be there so we can discuss pgd right from the outset.

This particular geneticist is not the actualy specialist for hd, would you believe we don't have one in Tassie - there's one from Melbourne who comes to Hobart every two months.

From the phone call we found out that we have to have an appointment with a neurologist (whos genenrally only available once every three months for hd), a psychologist and the geneticist from Melbourne - i'm exhausted just thinking about it.

Well, our journey begins.  I'll keep you all posted.

Katie

Hi Katie,

The testing process must be a bit different maybe in TAS?  I was offered the option of seeing a neurologist if I wanted to, but didn't have to.  And I didn't have to see a psychologist, just met with my genetic counselling lady and had a video conference with the genetic specialist in Newcastle.  Maybe you could ask if video conferencing is an option for you to meet with the specialist?

It is all a bit overwhelming when you start organising it!  Hope you are both going well.

wow Katie you are going forward in leaps and bounds...Its a huge process but you have the ball rolling so thats great.

You would think that Tazzie having the population it has with hd there would be a specialist down there ...but thats great they fly her in

How are you guys feeling about it all?...other than being exhausted...lol...Matt sounds pretty determined he knows what the result will be...tell him so did i ...i mean theres a chance he is right...but theres a chance he is not too...which would be awesome...but either way you guys have eachother and your family
Keep us posted
Michelle

Hi all

I know I haven't posted for a while but I needed to sort a few things out in my own head

Matt and I had an appointment with the hd social worker and a geneticist Wednesday last week.  The geneticist listed all of our options in relation to having children and didn't influence us about any of them - she said it was comletely up to us and that everyone has to make their own choice based on their own situation.

She discussed pgd ivf with us and not only did the financial burdon sound very difficult (something we probably could have tried to struggle through) but the success rate of pregnancy is not fantastic.  The geneticist told us that most people at risk or even pHD decide to take their chances and have children - and believe me, after our discussions with her I can understand why.

I spend all of Wednesday night and Thursday morning crying - everything seemed like it was going to be so difficult.  Then matt and i had a chat with our gp.  He really helped us put things into perspective.  He said to matt that although hd is a terrible disease, you are at least blessed with time, unlike many other terminal illnesses.  A lot of the time I say to myself 'why me, why this terrible disease, couldn't it be something else'.  Meanwhile, there's probably a family down the street struggling with cancer and thinking why them.  My point is, almost every family has their difficulties and everyones problems are significant to them.

Then we got onto thinking about just trying to fall pregnant.  Is it any different to women who are 40 and have a 1 in 20 chance of having a baby with down syndrome - that risk increases every year after the age of 40.  Is it any different to families having children where there's high instances of cancer in their families or the hundreds of other genetic diseases that may not be known about.

anyway, lots of thinking has been done and if anything this has brough matt and i closer together.  He is still determined to find out but we are really leaning towards trying to have a baby naturally - i know some people would think this is selfish, but we will both make really good parents and matt always says that he would never have wanted his parents not to have hime just 'cos there was hd in the family.  We have talked to matts dad about it (who had children knowing there was a risk) and he agrees.  If you are happy with the decision, then you have to live your life the best that you can and enjoy it.

anyway, over the next 2 weeks we have a neurologist, a psychologist and a geneticist appointment so we'll see how things go.

Sorry about the huge post, but had lots of things to get off my chest.

Love Katie

awe katie..i hope you are ok , im sure its going to be a very big emotional rollercoaster.  

You are doing great though and getting all the information you possibly can. At least when you make your final decision it will be a well informed one. Its such a shame they dont look at the long term benifits of IVF as a potential cure to this disease and fund it so that money is not a barrier for families.

Katie have you guys spoken about the role your circumstances will leave you with, if your husband does have hd? I guess im just thinking what support you have so that if he does become unwell you have lots of people around you to help out...i guess thats just something that was going around my head.

You guys will make the right decision which fits for your family... I dont think you are being selfish at all...you are wanting what most couples want in there life and that is perfectly normal...i guess we just have to think about things a whole lot more and look at what the consequences might be in the future....preparing and planning for that time though i think can avoid some potential problems and make things a whole lot easier...and you guys are doing that by talking and be open about HD.

Goodluck with your next appointments! hang in there
Love Michelle

hi guys,

i also don't think your being selfish at all katie its only natural what your feeling. i understand completely my father has HD and i have not yet made any plans to be tested and may not. i am expecting my first child in 8 weeks now. we went through exactly the same. i or should i say we decided that my life i wouldn't trade for anything so why should i deny the love and support i can offer a child just because i may have HD. my partner has type I diabetes also my family have a history of cancer there are all these things relevent to bringing in a new person into the world, but not often thought about. also in my nursing carreer i have seen alot, much of it most people couldn't even imagine. i have learnt life is a precious gift to give but it can be taken away by any means. good luck in your desicion. i hope everything works well. Also i don't agree with michelles comment on using IVF as a means of wiping out the disease. i know your only thinking of the wellbeing of the future generations and i don't want to take that away from you, thats a very good quality you have. but once we begin with HD the medical society will begin to focus on heart disease then cancer the before we know it we become all genetically engineered losing the character and personality that is often brought with human struggle. they made a movie about it called gattica (i think thats what its called). some of you may not agree i know im just giving my opinion thats all.

thanks Glen.