If you do want to know, ask your GP for a referral to a genetic counsellor. You'll have several appointments with the counsellor. It's only done once all the benefits and risks have been explained. The test involves checking a sample of your blood for the genetic fault that causes the condition.
It can take a few weeks to get the result. The Huntington's Disease Association has more information about genetic testing for Huntington's disease. In that time many things are discussed, as one Genetic Counsellor explains:. There may be discussions around alternatives to testing, possible impact on other family members and the question of timing of the test.
To begin the testing process you usually need to speak with your doctor, who will then put you in contact with your local genetics department. If at any stage during the counselling process you change your mind and do not want to be tested, you can stop the process straight away. Some people even get all the way to having their blood taken and decide now is not the right time for them to hear their results, so they ask for their results to be kept under lock and key until they feel ready to collect them.
It is very important to remember that testing is a personal choice - a choice only you have the right to make. Some people in your life may tell you to test or not to test. But it is not up to them at all - it is entirely your decision and you should only get tested if you are sure this is what you want.
After the countless words from people, I finally realised it is not up to them and I have to feel it in my heart when the time is right. There is no right or wrong answer when it comes to making a decision about testing. People are different! We all live different lives and we all make different decisions.
Although it is your decision, you may also wish to discuss your feelings with those closest to you like a partner for whom the result will also have a bearing. But ultimately it is your choice. If you decide that you want to be tested and feel now is the right time for you, then it is important to be prepared. One of the main practical things you may wish to do before you get your test result, is to get life insurance, as you may experience higher premiums if you seek insurance after you have tested positive.
Whereas if you already have insurance before you test, then you do not need to disclose your test results to insurers and your results will not affect your existing insurance. Issues with insurance vary depending on where you are and which country you are in.
Young people tend not to think about things like insurance, it is usually something people look into when they are buying a house or starting a family etc. But insurance is actually very important and should not be overlooked.
So I just pushed it to one side and focused on the testing process. Now, some years later, I do wish that I had taken out insurance. It is your choice, you do not need to be insured in order to test - it is not a requirement, but it would benefit you in the long run to look into it.
Aside from the practical ways to be prepared, testing is also a very emotional process from start to finish. From making the decision to test, going to your genetic counselling sessions, having your blood taken and receiving your result - each stage provides its own emotional hurdles to overcome. Dealing with the emotions of testing is incredibly challenging for anyone. When you take into account that the whole process can take months, it can become very difficult for a person to maintain their calm throughout.
This period covers the time between having your blood sample taken and receiving your test results. People have to wait for weeks in-between their blood being taken and their test results appointment. Just how long that wait is depends on where you live and the clinic you are using. But this can be an incredibly difficult time for a person in the testing process; those weeks can often feel like months!
People can become very anxious during the waiting period and it is important to try and stay busy during this time. I believe those were the hardest weeks of my life. Every day, it was a battle of thoughts going through my head, making it hard to sleep.
How do you deal with such an internal battle? If you feel it would be helpful to speak to your genetic counsellor during this period do call them they will not know your result at this stage. Or again, seek advice and support from those who have experienced the waiting period themselves - this can be quite comforting. Preparing for results is another challenging aspect of the testing process. Our caring team of Mayo Clinic experts can help you with your Huntington's disease-related health concerns Start Here.
No treatments can alter the course of Huntington's disease. But medications can lessen some symptoms of movement and psychiatric disorders. And multiple interventions can help a person adapt to changes in his or her abilities for a certain amount of time. Medications will likely evolve over the course of the disease, depending on overall treatment goals. Also, drugs that treat some symptoms may result in side effects that worsen other symptoms. Treatment goals will be regularly reviewed and updated.
Antipsychotic drugs, such as haloperidol Haldol and fluphenazine, have a side effect of suppressing movements. Therefore, they may be beneficial in treating chorea. However, these drugs may worsen involuntary contractions dystonia , restlessness and drowsiness. Other drugs, such as risperidone Risperdal , olanzapine Zyprexa and quetiapine Seroquel , may have fewer side effects but still should be used with caution, as they may also worsen symptoms.
Medications to treat psychiatric disorders will vary depending on the disorders and symptoms. Possible treatments include the following:. A psychotherapist — a psychiatrist, psychologist or clinical social worker — can provide talk therapy to help with behavioral problems, develop coping strategies, manage expectations during progression of the disease and facilitate effective communication among family members.
Huntington's disease can significantly impair control of muscles of the mouth and throat that are essential for speech, eating and swallowing. A speech therapist can help improve your ability to speak clearly or teach you to use communication devices — such as a board covered with pictures of everyday items and activities.
Speech therapists can also address difficulties with muscles used in eating and swallowing. A physical therapist can teach you appropriate and safe exercises that enhance strength, flexibility, balance and coordination. These exercises can help maintain mobility as long as possible and may reduce the risk of falls. Instruction on appropriate posture and the use of supports to improve posture may help lessen the severity of some movement problems. When the use of a walker or wheelchair is required, the physical therapist can provide instruction on appropriate use of the device and posture.
Also, exercise regimens can be adapted to suit the new level of mobility. An occupational therapist can assist the person with Huntington's disease, family members and caregivers on the use of assistive devices that improve functional abilities.
These strategies may include:. Managing Huntington's disease is demanding on the person with the disorder, family members and other in-home caregivers. As the disease progresses, the person will become more dependent on caregivers.
A number of issues will need to be addressed, and strategies to cope with them will evolve. Family and caregivers can help create an environment that may help a person with Huntington's disease avoid stressors and manage cognitive and behavioral challenges. These strategies include:.
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