May is Huntington’s Disease Awareness Month and looks towards creating awareness about the disease and to start a conversation on the impact of the disease on the well-being of affected individuals. It is an opportunity to those in the Huntington’s Disease (HD) community to reach out to people by sharing some understanding on the rare condition and with years, social media has only made it easier and effective.
HD is a progressive neurodegenerative disorder which is dominantly transmitted due to the abnormal elongation of the polyglutamine neurons (polyQ) chain in the Huntington (Htt) protein. It is an inherited disease that causes breakdown of nerve cells in the brain and has a broad impact on the functional abilities of a person gradually resulting in movement, cognitive and psychiatric disorders with a wide spectrum of signs and symptoms.
The movement disorders associated with Huntington’s disease can include both involuntary movement problems and impairments involuntary movements such as chorea (involuntary jerking or writhing movements), dystonia (muscle rigidity or contracture), slow or abnormal eye movements, impaired gait, posture and balance, and difficulty with speech or swallowing.
Cognitive disorders often linked to Huntington’s are difficulty in organising, prioritising or focusing on tasks, lack of flexibility or perseveration, lack of impulse control, slowness or difficulty in processing thoughts and learning new information.
The most prevalent psychiatric disorder is depression. This occurs due to the injury to the brain and subsequent changes in the brain function. Feelings of irritability, sadness or apathy, social withdrawal, insomnia, fatigue and loss of energy and suicidal tendencies are some of the signs and symptoms of the same. Other psychiatric disorders may include, Obsessive-compulsive disorder (recurrent, intrusive thoughts and repetitive behaviour), Mania (elevated mood, overactivity and inflated self-esteem) and Bipolar Disorder (condition with alternating episodes of depression and mania).
There is no cure for Huntington’s disease. But there are several approved therapies to help manage the symptoms of the disease and maintain patients’ quality of life after the diagnosis via brain imaging and other such advanced neurological tests alongside review of family medical history. The usual onset is in individuals within the age group of 30-50 years old but if diagnosed before the age of 21, it is termed as Juvenile Huntington’s Disease.
There are a number of organisations and support groups all over the world that have been influential in providing support and a welcoming environment for patients and families with HD. Huntington’s Disease Society of America (HDSA), Australian Huntington’s Disease Association, Huntington Society of Canada etc. are some of the groups actively working towards their objective.
#LetsTalkAboutHD is a social media campaign launched by the HDSA. The initiative encourages anyone affected by the disease to share their experiences on social media through videos, photos or personal stories using the hashtag. The awareness colour for HD is blue. In Canada, Light It Up 4 HD is a movement in which buildings, monuments and statues across the country light up in blue and purple during May to raise awareness for Juvenile HD (in purple) and HD (in blue) and to observe the Huntington Disease Awareness Month.
Huntington’s Disease Society of India is a group focusing on building a platform to educate and bring further awareness regarding the rare disease. Various talks, seminars, webinars and support group sessions are conducted all over the country but there is still a need and scope for more. Furthermore, research is continually ongoing in India and all over the world which could lead to the development of potential, new and innovative treatments in the future.