COAST CITIES — It’s been called one of the cruelest diseases; a genetic disease that wreaks havoc on those who have it and those closest to them. There is hardly a treatment for it and there is no cure — yet.
With the 11th annual Shoot to Cure HD June 15, there’s optimism that that will change.
It’s one of the biggest fundraisers put on by the HDSA (Huntington’s disease Society of America), San Diego chapter.
It’s at Chargers Park and is supported by the Spanos family and the Chargers, explained George Essig, president of the board, HDSA San Diego. And the event takes place on the team’s practice field, he added.
But apart from the fundraising, the main goal of the event is education, he explained.
HD is still a widely unknown disease despite its identification more than 100 years ago in 1872.
Essig, who has a family history of the disease, but isn’t a carrier of the gene, believes that part of the reason it’s not as well-known is that there’s a certain amount of denial involved.
“And because there’s no cure, there has also been a sense of hopelessness…so the families with Huntington’s, even within their own families, became isolated. People didn’t know how to treat them; they didn’t want to acknowledge that they themselves might get the disease. They didn’t actually know what it was.”
Even today, Essig explained, someone with the disease is hesitant to say anything for fear of losing their job, or of being dropped by their insurance because of its slow, degenerative process.
The disease occurs in about one in 10,000. UCSD follows about 150 people with HD.
Dr. Jody Corey-Bloom is a neurologist at UCSD Medical Center and clinical director for the HDSA Center of Excellence.
The Center is one of 21 centers nationwide founded to support patients with the disease, families and those affected by the disease. It was the first center west of the Mississippi, something the center takes pride in.
Once the disease becomes full-blown, daily life is really tough, said Corey-Bloom.
“Things like combing their hair, brushing their teeth, feeding themselves, buttoning their clothes, all of that becomes very difficult because of the abnormal movements,” she said.
The disease affects cognitive abilities, mobility, and the ability to talk and swallow and eventually leads to death.
While symptoms may not show until a person is in their 20s, 30s or 40s, one of the greatest difficulties for someone who may be affected by the disease is deciding on whether to get tested for it or not.
“For me, the hardest part quite honestly, is patients coming to see you and saying, ‘do you see anything yet?’”
And receiving a diagnosis can be devastating, Corey-Bloom said. When she first began running the clinic, she had often wondered why people with a family history of the disease didn’t get tested more often.
She now admits that if she had had a family history, she probably wouldn’t get tested either.
“Mainly that’s because there really is no treatment that’s effective for the disease. There really isn’t anything that you can actually do with any certainty to prevent or delay the onset of the disease,” she said.
At this time, what could go a long way to wiping out the disease is if those carrying the gene didn’t have children.
“We have a lot of research that is going on now,” she said. “I think a cure might be a little ways down the road.”
Though she is optimistic that a cure can be found.
For more information visit hdsasandiego.org or to register call Stephanie Alband at (619) 225-2255.