​Huntington’s Disease

Huntington’s disease is an inherited neurological disorder (that is, a disorder relating to the brain) that affects the cells in the brain, known as neurons. The disease is neurodegenerative, meaning that the cells in the brain progressively break down leading to their death. Huntington’s disease can have a wide impact on all of your functional abilities such as movement, muscle control, thinking, perception, behaviour, and personality.

If you believe you may have an increased probability of inheriting Huntington’s disease, you need to be watchful of the following symptoms:

  • Uncontrolled movements

  • Clumsiness

  • Balance problems

  • Mood swings

  • Depression

  • Irritability

  • Trouble with decision making

  • Difficulty in concentration

These symptoms are commonly ignored as others may feel that this is just due to laziness or lack of initiative. As the disease progresses, the symptoms may become much more advanced, including:

  • Impaired movement and muscle control, including the ability to swallow, eat, walk, speak etc.

  • Muscle rigidity

  • Seizures

  • Difficulty in organizing thoughts and retaining information

  • Impulse control

  • Sexual problems (either loss of sex drive or promiscuity/inappropriate sexual demands)

  • Depression and suicidal thoughts

  • Insomnia

  • Fatigue and loss of energy

  • Bipolar disorder

  • Mania

  • Other behavioural changes

The symptoms and progression of the disease differ on a case to case basis. Progression of symptoms in children is much faster than in adults. Life expectancy can range anywhere from ten to twenty years. Towards the end of your life, you will be entirely dependent on professional care as most basic functions will be impaired or lost. ​

If you have a family history of Huntington’s and are facing any of the above symptoms, it is highly recommended that you get tested for Huntington’s. You can obtain additional information and expert medical advice from the Mind and Brain Service Line​ at The Aga Khan University Hospital.
Your time with your doctor may be limited, so make sure to prepare for your visit beforehand. Here​ are some tips to help get you started.

If your doctor believes you are at risk for Huntington’s, he/she will take a detailed family and medical history and examine your symptoms in detail. This may include testing for:

  • Reflexes

  • Balance and coordination

  • Muscle control

  • Hearing

  • Vision

  • Speech

  • Mood

  • Memory

  • Emotional state

  • Pattern of behaviour

Genetic testing is also available to confirm the diagnosis. A blood sample will be taken, from which your DNA will be extracted and analysed to check whether you have inherited the faulty gene. Your doctor may also conduct a brain scan to screen for any abnormalities. This may include:

  • Magnetic Resonance Imaging (MRI): this test uses radio waves and a magnetic field to produce detailed 3-dimensional images of the brain. Using this, your doctor will be able to identify any abnormalities which may be causing the symptoms. It is a painless, non-invasive procedure and will take around an hour to complete.

  • Computerized Tomography (CT) scan: X-rays will be used to obtain cross-sectional images of your brain, in order to identify abnormalities.​

There is no cure for Huntington’s, but with the right therapy and management, your quality of life may be improved for several years.

Medications can be prescribed to deal with many of the symptoms, for instance:

  • Tetrabenazine and anti-psychotic drugs to control muscle spasms. These may have side effects such as drowsiness, nausea and restlessness.

  • Anti-depressants and mood stabilizing drugs to treat psychiatric symptoms such as depression and bi-polar disorder.

Several types of therapies are also available, and include:

  • Speech therapy

  • Physical therapy

  • Occupational therapy

However, the eventual progress of the disease cannot be controlled. Towards the end of your life, you may need to be placed in palliative care or have a trained nurse available at all times.​

The Aga Khan University Hospital offers various support services to help with managing or recovering from the disease or condition. These include but are not limited to nutrition, physiotherapy, rehabilitation, specialized clinics and some patient support groups. Your doctor or nurse will advise you accordingly.
The Aga Khan University Hospital offers financial assistance to those who are in need and fulfil the eligibility criteria. For further information, you can contact the Patient Welfare Department. You can find the contact number of the Patient Welfare Department in the ‘Important Numbers’ section on the website homepage.
The financial counselling staff is available during office hours, at the main PBSD (Patient Business Services Department), to answer your financial queries on treatments’ costs and authorize admissions on partial deposit as per hospital policies allow. The financial counsellor in the emergency room is open 24/7. You can find the contact number of the Patient Business Services in the ‘Important Numbers’ section on the website homepage.
Your doctor and or nurse will give you specific instructions about the prescribed medication. Please ensure that you take or use the prescribed medicine as advised. It can be dangerous to your health if you self-prescribe. Please inform the doctor or nurse beforehand if you have experienced any adverse reactions to any medications in the past. If you experience any symptoms of drug poisoning, overdose or severe reaction please contact the Pharmacy Service at The Aga Khan University Hospital immediately. You can find the contact number of the Pharmacy Services in the ‘Important Numbers’ section on the website homepage.

The information provided on our website is for educational purposes and not intended to be a substitute for medical advice, diagnosis or treatment. You should always seek the advice of your doctor or other healthcare professional provider.