Huntington Disease Lighthouse Families

For HD families ... by HD families
 

in search of advice

Posted by Jennifer 
in search of advice
July 05, 2000 12:53PM
My mother-in-law is one of four children. Her two brothers died of Huntingdon's Disease. Her sister was diagnosed a few years ago. Due to a break in family communication, my husband and his brothers just learned of their aunt's diagnosis.
My mother-in-law is at least 65 and is in very good health. Her "senior moments" are becoming more frequent, but that is all we've noticed.
My question is this: are my husband and his brothers considered at-risk due to the fact that both their maternal uncles and their maternal aunt have Huntingdon's? I'm particularly concerned because my husband and I are expecting in two weeks, hence there's a new generation to think about.
If anyone can answer my questions/allay my fears, I would greatly appreciate it.
RE: in search of advice
July 05, 2000 02:00PM
The good news is that, the fact that your MIL's siblings were diagnosed as HD positive has absolutely no impact on the chances of your husband having HD. Yes, he is at risk simply because your MIL still has a slight chance of getting HD (although it's looking like she may have avoided the curse). The onset of HD can take place at any age although most start showing symptoms in their 40s. I'm not a statistician but I'd think that since she is WAY on the other side of the bell curve, the odds of her developing HD are significantly lower than 50% now. Of course, I didn't do too well at statistics in college. :-)

More good news is that things are changing rapidly now. Many knowledgeable people are now beginning to whisper that they expect a cure withing 5 to 10 years. Treatments are beginning to be developed. We had already had our first child before we found out that my wife had HD and we elected not to have another. But that was before the gene was found and before all of the recent discoveries. I'm pretty sure my decision now would be to go ahead and have another child

The only way to put to bed any doubt in your mind is for your MIL to be tested for HD. These can now be done privately and confidentially and for less than $500 in many clinics across the country.

The important thing that I wanted to communicate was that the only person that you need to consider when determining the "at risk" status of your husband is your mother in law.

Best wishes,
Steve
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