Fated family line

Jeanette Bottrill and husband Francis. Photo / John Cowpland, Alphapix

Jeanette Bottrill was 36 when it was confirmed that she had Huntington's disease. She was told on her birthday, a month after the death of her mother.

It turned out that it had been in her family for generations: "My mother had it, her mother had it, I have it, my sister has it."

Bottrill says it's not unusual for it to go undetected for a long time. "It's almost like a skeleton in people's closets. People just thought [Huntington's sufferers] were drunk, or mentally ill."

Some people in her support group have parents who were given electric-shock therapy. Her father was told that his mother-in-law was insane.

Fifteen years on from Bottrill's diagnosis, she is well practised at describing the disease in layman's terms. "If your orange doesn't get enough juice, it dries up. Huntington's patients are all very different but we have a neurological illness that shuts down different parts of the body from the brain."

All six of Bottrill's aunts and uncles on her mother's side had Huntington's. One of her uncles died at 50 of choking, which is common for sufferers. Another died recently. "The physical side was hell for him for years."

Bottrill suffers speech problems as a result of the disease. "It doesn't mean the brain's not working but the tongue is not flapping like it used to."

She used to work in hospitality but has not been employed since her diagnosis.

She and her husband have drawn up a bucket list.

"My husband and I have set goals ... knowing I might deteriorate. We're not going to leave it too late."