But tapping into a support system, such as a social worker, therapist, or support group, can make the journey a bit less daunting. With the help of a health care team, people with Huntington's can live independently for many years.
John Jerome's spinal cord shines white beneath the surgeons' headlamps, crisscrossed by a web of bright-red blood vessels. He's been on the operating table for more than four hours.
Above the fist-sized opening in his neck hangs a complex steel contraption. It's fixed in place by four posts: two wedged into Jerome's skull and two more in the vertebrae below the surgical wound. Invented by Emory neurosurgeon Nick Boulis, MD, it serves a single purpose: To hold steady the thin needle plunged into...
Huntington's disease (HD) is a hereditary and progressive brain disorder. You can't "catch" it from another person.
Although symptoms may first show up in midlife, Huntington's can strike anyone from childhood to advanced age. Over 10 to 25 years, the disease gradually kills nerve cells in the brain. This affects the body, mind, and emotions.
Symptoms can vary greatly from person to person. And stress or excitement can worsen symptoms.
Some symptoms are easier to spot than others. Abnormal movements may be the first thing you notice. Weight loss can be a concern at all stages.
Symptoms of Huntington's disease tend to develop in stages.
Early stage. Changes may be quite subtle in early stages, making it possible to keep driving and working. You may just require a little extra help.
Some common early symptoms:
Slight changes in coordination, affecting balance or making you more clumsy
Middle stage. With time, symptoms begin to interfere more with your day-to-day life. For example, you might start to drop things or to fall. Or you may have trouble speaking or swallowing.
Staying organized may be difficult. And emotional changes may put pressure on relationships.
Late stage. In this stage, people with Huntington's must depend on others for their care. Walking and speaking are not possible, Most likely you will still be aware of loved ones around you. Fidgety movements may become severe, or may subside.
In children or teens, Huntington's may progress more quickly and cause symptoms like:
Stiff or awkward walking
Changes in speech
Trouble learning new information, or loss of previously learned skills
For now, treating Huntington's involves managing symptoms: