Speaking Out ~ Living With HD

Learning that you are at risk

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Learning that you are at risk
Chapter 4 Young People At-Risk

However you learn that you are at risk to HD, you are going to worry about the possible consequences, but the manner in which you were told will to some extent affect your outlook.

If your parent developed HD early on, you may have grown up with its constant presence so that you are never actually told about HD - though the knowledge is around.

You may have been subjected to the stresses of living with HD from an early age and though this may have had a profound effect on you, knowledge of the disease does not come as a shock.

If you are a little older when your parent is diagnosed, then again the knowledge of its effects comes  gradually. You may experience great sorrow at a loved parent changing physically and mentally until perhaps roles are reversed and the child cares for the parent.

It needs to be remembered that not all  people suffering from HD are affected in the same way. If there is one aspect of the disease that you find particularly distressing in your parent it does not mean that you would suffer in a similar way.

Seeing a dependant parent may also make you fearful for your own future and possible loss of independence,  a thought which is difficult to live with.

Where this is no evidence of HD in the family, perhaps because a parent is at risk but has not shown  any symptoms, it can be a great shock for a teenager suddenly to be told the facts of the disease. It may seem at first to disrupt completely all your plans for a career, marriage and the way you want to live your life.
However you learned about HD, you will have a number of anxieties about the future. Perhaps you may  even be worried about your present health - whether in fact you could already be showing symptoms.
You may be concerned that you look like or have a similar personality to your parent with HD and irrationally fear that you are therefore mor at risk.
These are common and very under-standable anxieties which can be dealt with if brought out into the open and discussed, but can be overwhelming if kept to yourself.
Knowledge of the real facts of the disease, rather than the belief in some of the myths that surround it, leads to a realistic assessment of your situation. For instance having a parent who is at risk, puts you in a different position from those whose parent is already affected, and this may influence your outlook.
An appointment with a neurologist or geneticist organised by your family doctor would give you the chance to ask questions and clarify the information you have already received.