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Testing, or at risk Discuss testing for Huntingtonís disease, and living with the risk of HD

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Old 28-06-15, 07:25 PM   #11
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Join Date: Jan 2015
Posts: 82
Default Re: Have some questions?

Hi there Drummer,

I have found some resources that may help you in Ohio but they are quite far from where you live.

Ohio State University has a Huntington Disease Society of America Center of Excellence. I realize that they are in Columbus which is 100 miles from you but if you can get there these are the doctors who can help you best. They specialize in Huntingtons and provide testing.

My own experience with the HDSA center at University of California Los Angeles has been very good. They gave me an appointment within two weeks to see their doctors for an examination.

The purpose of the exam is to check and see if you are showing symptoms before you take the test.
This could be a good first step for you because they are the real experts and can answer all your questions and concerns.

Iím amazed that you have been told itís 8 months to wait for the test and donít think that will be the case with this HDSA center.

I hope this info helps

Here is the contact information:


395 West 12th Ave., 7th Floor, Columbus, OH 43210

Allison Daley, MS, CGC

Sandra K. Kostyk


The closest support group that I could find is the Ohio Valley Chapter in Cincinnati.
I realize they are 75 miles from you but you could try giving them a call and see if they are aware of any resources closer to you.

Contact Us
President: Dan Leugers
3537 Epley Lane
Cincinnati, OH 45247

Phone: 513-741-HDSA (4372)
Fax: 513-741-4645
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Old 28-06-15, 07:33 PM   #12
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Join Date: Jan 2015
Posts: 82
Default Re: Have some questions?

I should add that testing is not free.
I believe it's $500 if you are not using insurance.
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Old 28-06-15, 08:48 PM   #13
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Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,152
Default Re: Have some questions?

This info is taken from

OHIO VALLEY CHAPTER [72 miles from Dayton]
3537 Epley Lane, Cincinnati, OH 45247

THE BEECHWOOD HOME [73 miles from Dayton]
2140 Pogue Ave., Private Dining Room, Cincinnati, OH 45208
Marybeth Bialick 514-741-4372

MARY BETH BIALICK,MSW, LISW [71 miles from Dayton]
Cincinnati, OH 45247
Ohio Valley Chapter 513-741-4372

3333 Burnet Avenue, Cincinnati, OH 45229
Human Genetics Division 513-636-4760

New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
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Old 30-06-15, 12:05 PM   #14
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Join Date: Oct 2014
Location: Merseyside
Posts: 887
Default Re: Have some questions?

Hi Drummer

Hope you are okay. Just popped on and see that Stuart has given you some excellent direction and positive advice and assistance, as too has Prof. Allan.

I think I am right in saying that you are in your early twenties and, in an effort to calm you, by and large hd symptoms don't markedly kick in until your chances are that you may have many years ahead of you hd free anyway you look at it - just like my husband. I appreciate this is a generalisation and I fully understand your desire to get tested - I would be the same myself...but you need also to think seriously about counselling. How would you cope should you be tested and find out you are positive at the moment, when you are distressed and confused by the worry of it all?

Wishing you well.
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Old 30-06-15, 07:35 PM   #15
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Location: Surbiton
Posts: 651
Default Re: Have some questions?


I just wanted to say from the perspective of someone who has tested positive for the gene, that the testing and then living with the answer is a very hard thing to go through.

You think that you are done with grieving because it has become almost impossible to recognise your mum in the HD patient, but I really had a very low year when she died. I went back into counselling for bereavement and went back and found an HD support group because the counsellor was at a loss to know what to say about the HD.

There just may be a better time to choose to find out your status and agree with Shiraz that you need some good support around you. But a good genetic testing service may provide avenues to this support.

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