A diagnosis of Huntington disease invariably deeply affects the person and every member of the family, as well as a wide circle of friends, work associates, neighbours, and others in the community.
As with any serious diagnosis, the person with HD and the family
can expect to experience a variety of emotions, some even frightening
or contradictory. Disbelief or denial, rage, despair, guilt, shame,
sadness, loneliness, self-pity, envy of others' good health, relief
that a diagnosis has finally been made, thoughts of "why me?"
-- all of these feelings and many others are common and normal
Families should keep in mind that their physical and emotional
needs are important and should be met. They should not be afraid
to ask questions and should make sure they understand the answers.
Families must also remember that needs vary over time and a solution
for one stage of life may have to be re-examined at another.
Counselling can go a long way toward helping persons with HD and
families retain maximum productivity and acceptance while coping
with a difficult and challenging situation.
The whole family must understand what is happening. It is important
accept the truth -- that a family member has HD -- and speak openly
about the situation. It may be very helpful for children to realize
that it is the illness, and not them, causing a parent's outbursts.
There are helpful articles available on the needs and reactions
Chronic illness like HD tends to isolate family members from
people just when they need them most. Truth and honesty within
the family helps friends and relatives feel more comfortable in
their relationships with the person with HD and makes it easier
to lend much needed help and support.
Persons with HD and their partners sometimes experience role
changes. Over time, the relationship will become drastically altered,
and the person with HD will be less of a friend, companion and
lover. Common sexual problems are loss of desire, inability to
have sex, and conflicting desires and needs. A general loss of
desire may be due to depression, medication or emotional
This change in the relationship adds personal grief to a complex
situation, and both the partner and the individual with HD may
need professional support to deal with these changes.
Thoughts of suicide happen with persons who have Huntington
disease, but talking about suicide does not make it happen. In
fact, talking about it can often uncover alternative solutions
to what seems to be an intolerable situation.
Family members experiencing changes in the behaviour of the
person with HD may not realize that this does occur in HD. Feeling
that it is unique to their family, they may not wish to share
it, or try to handle it on their own, and further isolate themselves.
Long-range financial and legal planning is important to consider
-- for someone who has just been diagnosed or for someone at risk.
Topics to discuss with a lawyer may include giving a power of attorney,
perhaps changing one or both wills depending on their provisions,
changing ownership of property such as the house and cottage,
making bank accounts and safety deposit boxes available to the
other partner and so on.
Obtaining insurance coverage for persons at risk has become
serious problem. The Huntington Society of Canada, through the MELSI
(Medical, Ethical, Legal, Social Issues) Committee of the Canadian
Genome Project, is currently exploring alternatives. It is also
monitoring the situation globally through the International
Because of the efforts of the Huntington Society of Canada, there are many resources available to HD families. A wide range of informative publications and videos can be purchased or borrowed, (recommended reading: Understanding Huntington Disease: A Resource for Families.) Chapters and area reps in each province can put the family in touch with a large network of support, both lay and professional, to help the family cope.
Daily living with HD
Hearing a diagnosis of Huntington disease is always hard. There are generally five steps we all go through when we
are learning to cope with a difficult situation.
People with HD and their family members go through the same steps. In
no particular order, they are:
Denial -- stunned, dazed or refusal to
accept the information; sometimes the person accepts the
diagnosis well, but later cannot recall what was said. In many
cases, denial in people with HD is due to brain dysfunction. They
may suffer from anosagnosia (a lack of self-awareness) and don't
Anxiety -- a response to fear of the
unknown future; the person suffers headaches, fatigue,
insomnia, irritability, and will require support.
Anger -- the person may be openly hostile
to friends, relatives and medical personnel or display
Depression - this is a natural and necessary
phase for eventual readjustment.
Stability -- a period of acceptance and
adjustment to the diagnosis. With acceptance, the person
begins trying new behaviour, planning for that other way
The person who has just been diagnosed with HD should be encouraged to carry on normally, at work and at home, for as long as possible. It is often better to continue with lighter or easier jobs rather than retire from work or domestic duties altogether.
The quality of life of the person with HD and family is usually
enhanced by therapeutic intervention: communication and swallowing therapy, physical therapy, occupational therapy, nutritional therapy, recreation (therapy) activities, music therapy,
art therapy, pet therapy, relaxation therapy, and
various discussion groups to reflect the interests of various individuals (music appreciation, bible study, etc.)
The Huntington Society of Canada has several helpful booklets, articles and videos on these subjects. In some communities there are day programs where people with HD get together to socialize,
have fun and exercise. A sense of peace and acceptance often comes
from being able to share with others who truly understand what
one is going through.
It is also wise for the person with HD and his/her partner or
caregiver to work out a cooperative method for dealing with safety and medical issues, such as driving, smoking and wearing a Medic-Alert bracelet.
Huntington's Disease Society of Canada
Internationally, please visit the International Huntington's
For Support Resources in the United States, check your State Pages on this website or contact the HDSA.
For guidelines and resources on Huntington's Disease, check
out the HD Specific Handbooks section on this website or visit the HDSA website, "Information",
"Publications For Resale".