A diagnosis of Huntington's disease may come as quite a shock. There's a lot to take in.
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.
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
- Fidgety movements that you can't control
- Slowing or stiffness
- Trouble thinking through problems
- Depression or irritability
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
- Increased clumsiness
- Changes in speech
- Trouble learning new information, or loss of previously learned skills
For now, treating Huntington's involves managing symptoms:
Medications can help control fidgety movements. Your doctor can work closely with you to manage any side effects and to change medications, if needed.
Speech or language therapy may be helpful for any problems with speech or swallowing.
Occupational or physicaltherapy may help you learn how to better control movements. And assistive devices such as handrails can help you manage your changing physical abilities.
Nutritional support ranges from using special utensils to focusing on nutrient-dense foods to supplementing with tube feeding in later stages.
Exercise may be very helpful. People with Huntington's who stay as fit and active as they can seem to do better than those who do not.
Just as important is getting support for any changes in your emotions and how you think. Depression often responds well to standard treatments. And basic strategies like breaking tasks into simpler steps may go a long way toward making these changes a bit easier for you and your family.
In 1993, researchers found the gene that causes Huntington's. Everyone has the HD gene, but in some families an abnormal copy of the gene gets passed from parent to child. If you have a parent with Huntington's disease, you have a 50% chance of having the gene and developing the disease.
- Men and women are equally likely to inherit the abnormal gene.
- If you don't have the abnormal gene, you can't get Huntington's or pass it on to your children.
- The disease doesn't skip generations.
If you or members of your family plan to be tested for Huntington's, it's a good idea to get professional genetic counseling first. Counselors can help explain what to expect from the test results.
With knowledge about the HD gene, scientists have been able to learn a great deal about how the disease affects the brain. More importantly, this discovery may help pave the way for future treatment.