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May is Huntington’s Awareness Month: What Families Need to Know

May is Huntington’s Disease Awareness Month. Most of you have probably heard of Huntington’s but, unless it has impacted your family directly, you may not really understand the disease.

The official definition, according to the Mayo Clinic, is that Huntington’s is “a rare, inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain. Huntington’s disease has a wide impact on a person’s functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders.”

While Huntington’s disease does share some common characteristics with Alzheimer’s disease, there are several striking differences:

  • It is rare: There are fewer than 200 thousand known cases of Huntington’s disease reported each year, compared to over 3 million cases of Alzheimer’s reported each year.
  • Genetically inherited: Huntington’s is 100% a genetically inherited disease characterized by a defective #4 chromosome, which is dominant. That means that an individual inheriting it from a parent will eventually develop the disease. While a small percentage of dementias such as Alzheimer’s disease are inherited, the disease can strike anyone.
  • Age of symptom onset: While Huntington’s disease can develop at any age, its symptoms most often occur in individuals in their 30s and 40s. As we know, dementias are predominantly found in older adults.
  • Muscular loss of control: One of the hallmark characteristics of Huntington’s involves motor ability. The disease causes spasmodic, uncontrolled movement as well as rigidity of the lower and upper parts of the body. This would include legs, arms, head and even the facial muscles.

What does Huntington’s disease have in common with dementias, such as Alzheimer’s disease?

  • Both are progressive brain disorders.
  • Both involve loss of cognitive abilities. This includes memory and, in the case of Huntington’s, episodic memory loss, which is a lack of ability to plan and organize.
  • Both can involve mood swings, which often lead to outbursts of inappropriate behavior as well as anxiety and depression.
  • Both are considered terminal diseases which, as of yet, do not have a cure.

It is important to know, however, that there are resources available to arm families with information they need to better understand Huntington’s disease and make the best decisions for their loved ones. Here are a few:

Huntington’s Disease Society of America

NIH Clinical Trials

Huntington’s Together

Huntington’s Buzz: News and Research

While Huntington’s disease is not curable, as with Alzheimer’s it is possible to use resources available to provide an enriching, supportive environment with health and safety precautions in place to help individuals with these diseases to live their best lives for as long as possible.