What's life like for a parent whose kid has HD?
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Q. What is life like for a parent whose child has huntington’s disease? What problems would the child have? How would the parent deal with those problems? How could I find more information on the disease? What organizations would be available for help?
Cable, 15, USA
A. Dear Cable,
Thank you for your questions. HD is mostly a condition of adults with an age of onset between late 30’s and mid-50’s. However, it can occur at any age including in children, teenagers and young adults. If the age of onset is less than 20 then it is classified as juvenile HD. Juvenile HD is very rare and accounts for only a few percent of those with HD. Generally it occurs when the gene is passed from the father to the child. Usually it occurs because the size of the CAG repeat increases at conception. For example, Dad might have a repeat number of 43 and an affected child might have 60 repeats.
Juvenile HD is a very severe disease. Like adult onset HD it can cause chorea (twitching involuntary movements), depression and anxiety and also a dementia with problems with planning, concentration, attention and organisation. Juvenile HD can also cause symptoms not usually found in adult onset HD. These symptoms include epilepsy, stiffness and slowness that looks like Parkinsons disease, unsteadiness and staggering that might make the child look as if he or she is drunk, spasticity (a form of muscle stiffness) and abnormal postures like curvature of the spine or twisting of the neck. We can treat these symptoms, but most kids with HD are still very sick.
It is very difficult for the parents of a child with juvenile HD. The child is usually very sick and needs lots of care. This is very distressing for the parents. Often one parent, usually the father, has HD and is also sick. That is, the parents have to deal with more than person in the family with HD and are under lots of pressure. Many parents will feel guilty and blame themselves for the child’s illness.
Other family members, including other children, will be affected by HD in a child.
What supports are available to the parents and other family members depends on where you live and what is available locally. Good sources of help or advice might come from the local HD service or HD clinic. Contacting the local or national HD association might also be another way of finding out where all family members (the affected child, parents and other children) can get help. Hopefully these might also give you more specific information about HD. HDYO might also be able to give you more information on the disease. Getting information can be really useful in helping people deal with HD.
Some people in a HD family feel they can’t ask questions or get help for themselves, even though having a family member with juvenile HD can be very tough to live with. Although I can understand why they might feel this way, I am absolutely certain that it is legitimate for unaffected family members, including other children, to ask questions, get information and get help when they need it.
I hope this reply answers all your questions