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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 17-01-13, 11:48 PM   #1
EmmaT14
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Default Those who tested positive do you regret the test?

Hi, i know this is a personal topic and probably raw for some. I have always felt i wanted to be tested since my parents told me my mum has it. As she is getting worse i feel like i need to know but everyone is telling me that i wil regret it and that there is no cure so what is the point. I totally disagree as i want children and would opt for the PGD...

Has anyone who tested positive completely regretted the test? Obviously once it is done there is no going back. I really hope there are some positives to having the test.

Emma
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Old 18-01-13, 12:13 AM   #2
lolly
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Default Re: Those who tested positive do you regret the test?

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Originally Posted by EmmaT14 View Post
Hi, i know this is a personal topic and probably raw for some. I have always felt i wanted to be tested since my parents told me my mum has it. As she is getting worse i feel like i need to know but everyone is telling me that i wil regret it and that there is no cure so what is the point. I totally disagree as i want children and would opt for the PGD...

Has anyone who tested positive completely regretted the test? Obviously once it is done there is no going back. I really hope there are some positives to having the test.

Emma
Hi Emma

My partner was tested last year and given the results in October. He has not regretted it at all. He has really struggled the last couple of years with symptoms that could have been HD. The worry of it was beginning to take over his thoughts all the time so he tested. He tested positive and is symptomatic. I can also say he has felt alot better since the test than he was before. That sounds strange but thats what he told the doctors today.

I think some people really regret having the test and others dont. One thing we did discuss together alot before the was the reasons for wanting to know and what if it was a positive result. He came to the conclusion that if he was cleared, it would spare his son the anxiety that he has had to endure over testing and clear him. If he tested positive then it would put him in a position of getting the best help he could as soon as he could and he would be under the hospital already if a cure or more effective treatments are found.

I wish you all the best with whatever decision you make
Take care
Lolly
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Old 18-01-13, 10:50 PM   #3
EmmaT14
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Default Re: Those who tested positive do you regret the test?

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Originally Posted by lolly View Post
Hi Emma

My partner was tested last year and given the results in October. He has not regretted it at all. He has really struggled the last couple of years with symptoms that could have been HD. The worry of it was beginning to take over his thoughts all the time so he tested. He tested positive and is symptomatic. I can also say he has felt alot better since the test than he was before. That sounds strange but thats what he told the doctors today.

I think some people really regret having the test and others dont. One thing we did discuss together alot before the was the reasons for wanting to know and what if it was a positive result. He came to the conclusion that if he was cleared, it would spare his son the anxiety that he has had to endure over testing and clear him. If he tested positive then it would put him in a position of getting the best help he could as soon as he could and he would be under the hospital already if a cure or more effective treatments are found.

I wish you all the best with whatever decision you make

Take care
Lolly
Lolly thank you so much for your response. It has made me feel a little optimistic again. Although i dont have children yet thats the same reason i want the test. Also for my partner as he is making a commitment too. Its good to hear that he is slowly starting to cope. I remember when my mum first started symptoms and it was so tough for her to accept it was the start.

Once again thank you. Hopefully i dont have to wait a further 5 months for an appointment.

Thanks again
Emma
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Old 19-01-13, 01:40 AM   #4
DH
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Default Re: Those who tested positive do you regret the test?

Once the genie is out of the bottle you can't put it back...

I tested positive but it's not quite the same for me - I'd had my daughter before I knew there was HD in the family and being a standard bloke I needed to know. It doesn't really make any difference to my life I guess other than trying to do all the research testing so I'm the first choice when it comes to drug trials...
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Old 19-01-13, 02:37 PM   #5
lolly
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Default Re: Those who tested positive do you regret the test?

It is such a difficult decision to make thats for sure. I think what DH just said about being first for all the trials also was a big factor in my other half's decision. It was a case of if they do find a cure or treatments to slow it down (and after the appointment we had the other day I personally am very optimistic) we wanted him to be able to get the treatments as quickly as possible. He also now has an opportunity to be part of the trials as he is going on to the database. He was told the other day that its people on this data base that are chosen to test the new drugs etc. Being in a position to do this also can give hope for his son - who is at risk. We hope that by the time he might be affected there are treatments etc.

We took the view in the end, that if he has the gene - he was born with it - he cant change it - it is a part of him - the only change will be he will be gaining the knowledge of it. In his case it also gave him an explanation of the symptoms he was having. He hasnt been able to work, so now the pressure is off with the jobcentre and generally people's attitude's have been very kind. The other thing is we specifically asked for the Queens hospital because of the trials. And I must say they have been fantastic to us. It really makes a big difference to just go down and they know everything. Our local doctor told us that in the 30 years he has been a doctor and currently there are 14 thousand patients in the practice, and lots of other doctors, he is the first person that has come through the practice with HD.

The professor at the appointment the other day said to him that if ever you was going to get diagnosed with HD, now is the best time, 15 years ago there was nothing, today there is lots of funding and people are working very hard to find a cure and to delay they symptoms. He said about a person who is donating massive amounts of money every year (50 million pledged for the next 25 years) and this is making the pharmaceutical companies get involved. He said he can see the light at the end of the tunnel. We walked out of the hospital elated. Dont get me wrong - we know that is not a guarantee but to gain that sort of money for such a rare disease is amazing. I worked it out to be over a billion pounds and that opens many avenues. You can tell Im thrilled because im waffling on hehehe.

Take care
Lolly x
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Old 25-01-13, 03:56 PM   #6
EmmaT14
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Default Re: Those who tested positive do you regret the test?

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Originally Posted by lolly View Post
It is such a difficult decision to make thats for sure. I think what DH just said about being first for all the trials also was a big factor in my other half's decision. It was a case of if they do find a cure or treatments to slow it down (and after the appointment we had the other day I personally am very optimistic) we wanted him to be able to get the treatments as quickly as possible. He also now has an opportunity to be part of the trials as he is going on to the database. He was told the other day that its people on this data base that are chosen to test the new drugs etc. Being in a position to do this also can give hope for his son - who is at risk. We hope that by the time he might be affected there are treatments etc.

We took the view in the end, that if he has the gene - he was born with it - he cant change it - it is a part of him - the only change will be he will be gaining the knowledge of it. In his case it also gave him an explanation of the symptoms he was having. He hasnt been able to work, so now the pressure is off with the jobcentre and generally people's attitude's have been very kind. The other thing is we specifically asked for the Queens hospital because of the trials. And I must say they have been fantastic to us. It really makes a big difference to just go down and they know everything. Our local doctor told us that in the 30 years he has been a doctor and currently there are 14 thousand patients in the practice, and lots of other doctors, he is the first person that has come through the practice with HD.

The professor at the appointment the other day said to him that if ever you was going to get diagnosed with HD, now is the best time, 15 years ago there was nothing, today there is lots of funding and people are working very hard to find a cure and to delay they symptoms. He said about a person who is donating massive amounts of money every year (50 million pledged for the next 25 years) and this is making the pharmaceutical companies get involved. He said he can see the light at the end of the tunnel. We walked out of the hospital elated. Dont get me wrong - we know that is not a guarantee but to gain that sort of money for such a rare disease is amazing. I worked it out to be over a billion pounds and that opens many avenues. You can tell Im thrilled because im waffling on hehehe.

Take care
Lolly x

DH and Lolly, thank you both for your responses. Its a good point about it being a part of you anyway and knowledge is the only difference. It also great to hear lots of research is happening as i have very little knowledge of this! My mum is part of that euro HD database thing. Im guessing thats the database you mean? I have to use my local genetics department which is so frustrating, as the one HD counsellor in the county has been off sick since October/November and still isnt back, and i was refused when i requested to be referred to bristol bath or Taunton. This waiting game is the worst part really as i just want to get on with things and the lack of correspondence means i cant. Going private is nearly £300 per 40 min consultation.

Emma
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Old 03-02-13, 11:17 AM   #7
lolly
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Default Re: Those who tested positive do you regret the test?

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Originally Posted by EmmaT14 View Post
DH and Lolly, thank you both for your responses. Its a good point about it being a part of you anyway and knowledge is the only difference. It also great to hear lots of research is happening as i have very little knowledge of this! My mum is part of that euro HD database thing. Im guessing thats the database you mean? I have to use my local genetics department which is so frustrating, as the one HD counsellor in the county has been off sick since October/November and still isnt back, and i was refused when i requested to be referred to bristol bath or Taunton. This waiting game is the worst part really as i just want to get on with things and the lack of correspondence means i cant. Going private is nearly £300 per 40 min consultation.

Emma
Yes I just looked at this form I have - it is called the European Huntington's Disease network. The doc said that when trials come up for testing they take the subjects to participate from that database as they already have all the information they need on there.

Im very sorry that you cant get access to the HD counsellors. We are lucky enough to live close to London so use the hospital at Queen Sqaure, London. I must say they are absolutely fantastic and it is nice to be able to go and not have to keep explaining anything about HD (like as in the local docs), I really feel for you, I can understand your frustrations x
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Old 03-02-13, 01:36 PM   #8
Katinka
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Default Re: Those who tested positive do you regret the test?

I am also involved in the European Huntington's Disease network as a subject. I am not tested (at risk) and I am not ready to do it right now but it feels good to be a part of it. I filled in forms and they did neurological tests. They also took blood but not for dna-testing. My husband also had to fill in a form which was rather funny because they asked if he was ashamed at me at some point. Well we have to laugh sometimes about the mess!
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Old 05-02-13, 03:34 AM   #9
just1moreperson
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Default Re: Those who tested positive do you regret the test?

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Originally Posted by lolly View Post
Yes I just looked at this form I have - it is called the European Huntington's Disease network. The doc said that when trials come up for testing they take the subjects to participate from that database as they already have all the information they need on there.
Just to say I think the database you are speaking of is the REGISTRY database - European wide observational study that works as a database so when they need people for trials they already have a list of possible participants to contact. This in turn hurries up the trial recruitment process. The study also has other benefits for research data etc.

North America has a similar study known as COHORT. REGISTRY and COHORT are in the process of merging and creating a global study known as ENROLL-HD (http://www.enroll-hd.org/html/about).

Matt

Ps. Testing positive and haven't regretted testing yet.
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Old 21-02-13, 01:23 AM   #10
EmmaT14
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Default Re: Those who tested positive do you regret the test?

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Originally Posted by just1moreperson View Post
Just to say I think the database you are speaking of is the REGISTRY database - European wide observational study that works as a database so when they need people for trials they already have a list of possible participants to contact. This in turn hurries up the trial recruitment process. The study also has other benefits for research data etc.

North America has a similar study known as COHORT. REGISTRY and COHORT are in the process of merging and creating a global study known as ENROLL-HD (http://www.enroll-hd.org/html/about).

Matt

Ps. Testing positive and haven't regretted testing yet.
Thank you for all taking your time to reply! It is nice to see some optimistic thinking after a positive result. And i feel the same way about being born with the gene and that testing is just gaining knowledge.
My mum is on the euro HD database too! Will post any progress i make but luckily the counsellors rang me this week and i have an appointment for two weeks time! Not sure how long i have to wait for the actual test though.
Emma
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