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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 14-10-14, 02:51 PM   #1
sunflower93
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Join Date: Oct 2014
Posts: 3
Default To test or not to test?

Hi all, I'm brand new to this message board (after lurking for a few days!). I hope you will all be able to help me, I've read numerous posts and you are all so supportive, I hope you will be able to help me calm my nerves.
I'm 21 and my Dad who is almost 60 was diagnosed with HD a few days ago. We had no idea it ran in the family as his father died at the age of 57 of cancer before showing any signs of HD.
Obviously it has been a huge shock to our family, and been devastating news to deal with. I'm very very scared of what the future holds, and the thought of my Dad having to go through the stages of the disease.
I know it's very early days but I'm wondering about testing. I have a brother and sister also, neither of whom want to be tested. I am on the fence, and as a natural worrier I am almost being drowned in anxiety at the moment of what to do.
I have always wanted children but have been told that it is suggested that I don't attempt to conceive naturally with my own eggs as if I am positive for HD this could be passed on to them. I know a little about embryo testing but it all seems very complicated and expensive! Am I selfish to just want to have my own children, get pregnant naturally and hope for the best?! (I do realise that I may be negative but I've got so many thoughts and questions in my head right now.)
My Dad's father never showed any signs of HD before he died, and my Dad is very late in age for symptoms to start. Is this a good thing? I've heard that this could mean if I am positive that I won't develop HD until late in life also? Sorry for rambling, I'm just trying to find any positive thoughts at the moment!!
How long from the onset of symptoms to severe deterioration? I know it is subjective to each individual, but is there a rough guide? I feel very in the dark about all of this :(
Please if anyone can shed some light on this subject for me I would be so grateful.
Thank you, Much love, SF xx
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Old 14-10-14, 09:42 PM   #2
Joseharry
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Join Date: Oct 2013
Location: Crayford, Kent
Posts: 250
Default Re: To test or not to test?

Hi Sunflower,

So sorry that you find yourself on the message-board and for your Dads diagnosis.

My name is Brenda and my Husband Roger was diagnosed with HD last November. Like you we did not know it was in the family as Rogers Mum died undiagnosed.

We have 2 children a Daughter aged 25 and a Son aged 22 so our family dynamics are quite similar. I hope I can help you.

My advice to you for now is to try to put a stop the constant round of questions in your head. Its all too much too soon.
You have had a terrible shock and you will need lots of time to come to terms with your new circumstances. We are almost a year post diagnosis and are all still reeling from the shock but in all honesty it has bought us closer together as a family.

The HDA produce some very informative fact-sheets which will answer most of your questions and we on the message-board will always be here to offer you support. You can also access the HDYO, the youth side of the HDA where you will find lots of help, support and advice from people in very similar circumstances to your own.

Thats enough from me for now,

I am wishing you and all your family strength,

Brenda.
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Old 15-10-14, 06:22 AM   #3
dennisw
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Join Date: May 2007
Location: South Cumbria
Posts: 847
Default Re: To test or not to test?

Hi Sunflower
A nasty shock for you and your family.
HD, like yours, was diagnosed in my wife's family with no known history, father died before showing any symptoms, my brother-in-law is in the late stages. He has 4 children and 3 grand children before diagnosis. None have tested so far. Most at risk do not, but still benefit from counselling.

Most regions in England and Wales have a Regional Care Advisor from the HDA if you ring the Liverpool office 0151 331 5444 they will give you contact details and the RCA can talk through your worries.

One thing about HD is that it progresses quite slowly, so it give you time to absorb it all.

Research is going at a pace, on the HDYO web site under the videos there is one of Dr Ed Wilde explaining to a group of your peers current research all quite positive. The video is about a year old and at the AGM weekend before last was even more up beat.

The RCA can talk through the options.

In February next year HDA hold a weekend conference from guys of your age 19 - 35 which you may find helpful both to answer questions and to meet guys going through what you are. It is heavily subsidised so may be worth considering.

I hope this helps and we can continue to support you.

Dennis
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Old 15-10-14, 09:04 AM   #4
sunflower93
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Join Date: Oct 2014
Posts: 3
Default Re: To test or not to test?

Thank you for your reply Brenda.
I'm sorry to hear that your family is going through similar circumstances to mine, and I applaud you on your ability to give so much support whilst suffering with grief yourself.
I agree that I need to stop all these questions in my head but it's just so hard :(
I have taken a look at the fact sheets on here and also made an appointment with my GP to talk through things, do you think this is a good idea?
Thank you once again.
SFxx
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Old 15-10-14, 09:07 AM   #5
sunflower93
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Join Date: Oct 2014
Posts: 3
Default Re: To test or not to test?

Hi Dennis,
I'm sorry to hear of your family's circumstances. I thank you so much for your reply and advise on who I can ring if I ever need to talk to someone. It can be nice to speak to someone who doesn't know your family and the situation can't it?
Thank you again,
SF xxxx
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Old 15-10-14, 12:37 PM   #6
angecornwall
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Join Date: Sep 2009
Location: Cornwall
Posts: 276
Default Re: To test or not to test?

Quote:
Originally Posted by sunflower93 View Post
Hi all, I'm brand new to this message board (after lurking for a few days!). I hope you will all be able to help me, I've read numerous posts and you are all so supportive, I hope you will be able to help me calm my nerves.
I'm 21 and my Dad who is almost 60 was diagnosed with HD a few days ago. We had no idea it ran in the family as his father died at the age of 57 of cancer before showing any signs of HD.
Obviously it has been a huge shock to our family, and been devastating news to deal with. I'm very very scared of what the future holds, and the thought of my Dad having to go through the stages of the disease.
I know it's very early days but I'm wondering about testing. I have a brother and sister also, neither of whom want to be tested. I am on the fence, and as a natural worrier I am almost being drowned in anxiety at the moment of what to do.
I have always wanted children but have been told that it is suggested that I don't attempt to conceive naturally with my own eggs as if I am positive for HD this could be passed on to them. I know a little about embryo testing but it all seems very complicated and expensive! Am I selfish to just want to have my own children, get pregnant naturally and hope for the best?! (I do realise that I may be negative but I've got so many thoughts and questions in my head right now.)
My Dad's father never showed any signs of HD before he died, and my Dad is very late in age for symptoms to start. Is this a good thing? I've heard that this could mean if I am positive that I won't develop HD until late in life also? Sorry for rambling, I'm just trying to find any positive thoughts at the moment!!
How long from the onset of symptoms to severe deterioration? I know it is subjective to each individual, but is there a rough guide? I feel very in the dark about all of this :(
Please if anyone can shed some light on this subject for me I would be so grateful.
Thank you, Much love, SF xx
sorry you're here Sunflower93 but you really need to just take one step at a time and give yourself plenty of time to let all this sink in.... HD is a rollercoaster !! it changes lives and it's great to have somewhere like this to vent off!! but please give yourself plenty of time you have so many questions which is understandable but give yourself time to let bits sink in!! xxxx
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Old 15-10-14, 08:36 PM   #7
dennisw
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Join Date: May 2007
Location: South Cumbria
Posts: 847
Default Re: To test or not to test?

Quite good to talk with your GPS but do not be surprised if the GP does not know a lot about HD. If the GP suggests referral, make sure it is to a Regional Genetics Service. If your GP is interested the HDA a has a handbook for GPs.
Dennis
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Old 15-10-14, 09:16 PM   #8
Cupcake
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Join Date: Mar 2011
Location: East Anglia
Posts: 1,483
Default Re: To test or not to test?

Hi

Sorry for the delay on welcoming you to the board, and so sorry you find yourself her and worrying about the future. Can't really add anything that the others have not already mentioned, but try and take a step back, and give yourself time to think about it all. I am sure you will find some really good friends through the youth section. I went to the AGM this year and there are some really courageous, inspirational young people out there, I hope in the future my sons can as positive, as some of the youngsters getting on with their lives.

As much as it is damming to find out being tested HD positive, there is still a future, and a life worth living to the full. It can make you plan and make the most of everyday, easier said than done, says the woman dreading her boys being tested, but it certainly makes sense not to put off until tomorrow what you
can do today. None of us knows what the future holds.

Take care xxxxxxx
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Old 16-10-14, 02:58 PM   #9
toosh
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Join Date: Jun 2011
Location: North East
Posts: 570
Default Re: To test or not to test?

Quote:
Originally Posted by sunflower93 View Post
Hi all, I'm brand new to this message board (after lurking for a few days!). I hope you will all be able to help me, I've read numerous posts and you are all so supportive, I hope you will be able to help me calm my nerves.
I'm 21 and my Dad who is almost 60 was diagnosed with HD a few days ago. We had no idea it ran in the family as his father died at the age of 57 of cancer before showing any signs of HD.
Obviously it has been a huge shock to our family, and been devastating news to deal with. I'm very very scared of what the future holds, and the thought of my Dad having to go through the stages of the disease.
I know it's very early days but I'm wondering about testing. I have a brother and sister also, neither of whom want to be tested. I am on the fence, and as a natural worrier I am almost being drowned in anxiety at the moment of what to do.
I have always wanted children but have been told that it is suggested that I don't attempt to conceive naturally with my own eggs as if I am positive for HD this could be passed on to them. I know a little about embryo testing but it all seems very complicated and expensive! Am I selfish to just want to have my own children, get pregnant naturally and hope for the best?! (I do realise that I may be negative but I've got so many thoughts and questions in my head right now.)
My Dad's father never showed any signs of HD before he died, and my Dad is very late in age for symptoms to start. Is this a good thing? I've heard that this could mean if I am positive that I won't develop HD until late in life also? Sorry for rambling, I'm just trying to find any positive thoughts at the moment!!
How long from the onset of symptoms to severe deterioration? I know it is subjective to each individual, but is there a rough guide? I feel very in the dark about all of this :(
Please if anyone can shed some light on this subject for me I would be so grateful.
Thank you, Much love, SF xx
Hi Sunflower

So sorry to hear of your Dad's diagnosis. The shock of finding out not only that your Dad has this horrible disease but finding out you are at risk is horrendous.

I will never forget the day we found out what my mother in law had and that my husband was at risk. Well if I tell you I lost nearly 1 stone in weight and only weighed about 7stone at the time that will indicate the extent of the shock. What I would say though you will get over it and with a little time to explore your options you will make the decision for yourself and what is best for you. I can't really add any more advice, than what others have already posted but just want to know we do know what you are going through as we have all been there.

I suppose when we found out there was no such thing as the HDA or this message board for support so at least there is some consolatiion knowing you are not alone.

You are also young and the research which is going on HAS to be in your favour.
Big Hugs Love from Toosh
xxxxxxx
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Old 16-10-14, 07:59 PM   #10
banda
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Join Date: Apr 2014
Location: Consett, County Durham
Posts: 472
Default Re: To test or not to test?

Stick with us all here on mb...the support is fab. My hubby was just diagnosed June this year and it can all be very difficult but we just take each day at a time and do what we can. You are young enough to take advantage of every opportunity...do so and just take your time. Keep calm and carry on!
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