What Are the 5 Stages of Huntington’s Disease?

HD Stage 1: Preclinical stage

• The preclinical stage is when mild symptoms start appearing, but the doctor has not diagnosed the person to have Huntington’s disease (HD).
• Symptoms of HD most commonly start between 40 and 60 years of life, but they can appear as early as 2 years or as late as 80 years.
• The affected person can usually carry out all their day-to-day work without requiring any assistance.
• Mood problems may appear at this stage.

HD Stage 2: Early stage

• The symptoms become noticeable enough to arrive at the diagnosis of Huntington’s disease (HD).
• There may be twitches or slight tremors in the hands or face, which may be missed as nervous tremors.
• Although people with HD carry out most of their daily activities, some activities do require help from people around them.
• The affected people can usually go or drive to work by themselves.
• There may be trouble in eating and sleeping.
• Thinking becomes difficult for some tasks that appeared simple earlier.
• The person grapples with depression, anxiety, and irritability.

HD Stage 3: Middle stage

• At this stage, people with Huntington’s disease (HD) are unable to carry out most of the activities on their own.
• Substantial help is needed from the people around in activities involving domestic and financial chores.
• People start experiencing difficulty in swallowing, and slurring of speech may be noticed.
• They might experience difficulty in walking and maintaining balance.
• There is drastically worsening in the thinking ability of the affected person.
• The person might experience difficulty in learning new things and remembering information.
• Depression and irritability become evident at this stage.
• Sex drive or performance may be reduced.

HD Stage 4: Late stage

• By this stage, people with Huntington’s disease (HD) require assistance in all areas of life and become bedridden. 
• Movements become extremely slow and rigid.
• They are unable to convey what they feel because of speech impairment.
• The inability to swallow necessitates the use of a feeding tube that is inserted surgically into the stomach.
• People may become constipated or have trouble urinating.
• Extreme difficulty in falling asleep or staying asleep is experienced.

HD Stage 5: End-of-life stage

The end-of-life stage is when patients become confined to the bed completely and dependent on others for all their activities. They need help to live the last few months or years of their lives peacefully and in the best way, they can.

• Patients may choose whether to spend their last moments in a hospital or at a familiar place such as their home.

Patients with Huntington’s disease (HD) usually live for anywhere between 10 and 20 years after the symptoms first appear. The cause of death usually is a complication of HD, such as pneumonia. Pneumonia in such patients results from aspiration of food into the lungs.

Doctors may refer to only the three stages of HD, namely, early, middle, and late for ease of explaining to the patients.

How early the stages begin and how severe the symptoms differ among patients with HD. These differences have been linked to variations in genetic mutation causing HD.