Huntington's Disease

[murielm99]

This evening, my adult children informed me that a young lady I knew well has just died from complications of Huntington's disease. She was 34. Her mother died of this hereditary illness at 38. Her grandmother died young as well. The grandmother was undiagnosed. Everyone thought she was an alcoholic.

This young lady's mother had four children before she was diagnosed. I don't know if she would have had children if she had known.

I taught this girl in a computer class when she was a senior. Before that, her aunt worked for me in the library. Her aunt and uncle took over much of the care of the children when their mother became ill. There was a great aunt who made sure there were plenty of pictures and good memories for the kids. She made sure the kids visited their mom in the nursing home, even toward the end of her life.

The young lady who just died had two children. As sad as it makes me to have seen three generations of this family suffer, I wonder about her decision to have a family. I suppose it is not my business to judge.

The family is collecting money to pay for the funeral. My son speculates that the young lady was never able to get life insurance, given the hereditary nature of the disease.

I am sad for this life cut short in such a terrible way. I hope her children escape this awful disease.

RIP

[No Vested Interest]

1. A family I know also has Huntington's disease coursing through several generations.

The husband of a woman I knew not so well through my church and children's school showed signs in his late 40's and soon was no longer able to work. Then the wife and I were co-workers, where I came to know her well and had great respect for the her for the burden she bore. All the members of this family have/had fine minds and have had good careers before some were diagnosed. As I understand it, presuming one parent is free of the disease gene, children of Huntington's parents have a 50/50 chance of inheriting the gene.

The disease was not diagnosed early in the husband, and as the grandmother referenced above, people assumed the irregularities in temperament was a psychological flaw. Years in nursing care followed.
After the husband died, their six children had the option of being tested for carrying the disease gene. That knowledge alone, if the test proves positive for the disease, is a heavy burden, affecting their present and future lives. AS I understand it, some were tested, others opted not to be tested.

One daughter, whose life had been erratic, including several marriages, told her mother that she believed that she had the disease. This was subsequently confirmed, and this woman deteriorated physically and spent her last years in a facility for "incurables", before dying.
A son, who had been a classmate of my daughter, was diagnosed at around age 40. He had a good mind and good job, and was married with one daughter. Soon he was not able to assist in his brother's deli, where one must multi-task during busy times.

The younger son, also married with one child, was convicted of child molestation, and sent to prison. It seems that his ability to resist certain urges was affected by Huntington's disease.

An older daughter also has the illness. She is unmarried, with o children.

Only two of the six children have escaped Huntington's - the eldest daughter, who is a college professor, and the youngest daughter, a physician. They each have two children, whom I presume have not been passed the disease gene.

Huntington's disease is a terrible scourge, both for the immediate victim and for the family members that may contract the disease.

May thoughts are for the young woman mentioned in the OP and for her family and all so afflicted.

[murielm99]

2. As far as I know,

the three surviving siblings have not been tested. Their dad told me that only one of the four had it. I hope that is right. The three siblings left are about the right age to show symptoms.

Arlo Guthrie is free of the disease. His father, Woody Guthrie, and his grandmother both died from it.