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Living in Sri Lanka and HD resources for testing

November 27, 2013

Huntington's Disease Youth Organization

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Living in Sri Lanka and HD resources for testing

Q. My mother had Huntington disease and she showed symptoms at her age 45. Gradually it became worst. She got paralysis at the age of 54 and after two years she died because of the disease. She suffered lot from this illness. She ate little food and she got huge weight loss.

We lived in Sri Lanka and in this country this disease concerned as a rare sickness and did not give proper attention to these patients. My mother got medicine from a neuron-specialist and he said this disease can’t cure. In our country we don’t have care houses or foundations for these patients. Our society looks at these patients as abnormal people. This makes our family hurt. Yet i don’t do a genetic test to search whether i have the disease because i am still studying and i don’t want to make my mind upset. If i have this disease i determine to be single forever because i saw how my father suffered mentally because of this situation. I want to know if i diagnose this disease at this age whether it can be help to get rid from this illness. Please help me to make my mind….

Dul Shani, 21, Sri Lanka

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A. Dear Dul Shani,

Thank you for your questions and comments. I have been to Sri Lanka to talk to the local neurologists about HD. They are keen to do more for families with HD, but have few resources at present. Unfortunately, gene testing is not to my knowledge available for free in Sri Lanka. Hopefully this will change one day.

I can appreciate how hard it is for Sri Lankan families coping with HD with so little help. It’s hard enough in wealthy Australia. The pressures you, your father & other family members must have been under would have been enormous.

Your mother got HD at a typical age and sadly passed away 9 years later. Many people with HD die or become very disabled at about 10 years of symptoms.

Since your mother had HD, you have a 1 in 2 or 50% chance of inheriting HD. Equally you have a 1 in 2 or 50% chance of not inheriting the gene.

Given your mother’s age of onset at 45, if you have the gene there is a good chance that you won’t get symptoms until a similar age. Since you are 21 years old, if you have the gene that means many years of healthy life are likely. There is also a good chance that by then there will be much better treatments for HD than now. That is, there is hope that your future will be different from your mother’s if you have the gene.

It seems to me that delaying testing whilst you finish your studies is a good idea. There is some evidence that physical and mental activity might delay the onset of HD, assuming you have the gene. I’d suggest that you exercise regularly (I recommend exercise such as a brisk walk 3 times a week for 20 minutes). As a student, you are probably doing more than enough mental exercise. At present, we don’t have medications or other treatments that delay the symptoms of HD. That is, delaying testing will not result in you missing out on preventative treatments that might delay the onset of HD.

If one day you do decide to have gene testing, then talking to a qualified counsellor who understands how hard it is to have a parent die of HD and who can help you go through the difficult process of gene testing would be a very good thing.

It sounds to me that you have lots of sad and hard memories of what happened to your mother. This is very common and normal for HD family members. Talking to someone, whom you trust and who is sympathetic, about your experiences is worth considering. I have found that doing so helps many young people dealing with HD.

Most children of my HD patients worry about whether or not they should marry or have children. Fortunately, most eventually find a partner and many have children. More importantly, most of my HD patient’s children find happiness. Talking with someone you trust can be very helpful in this regard.

I hope I have answered all of your questions. All the best for the future,