To me getting tested is a scary, life changing, necessary event. I know a lot of people put it off. My two brothers are among them. Gary put it off until we knew he had it already. He found out when he was 23.They just can't bear to have the diagnosis. Who can? Anyone faced with that kind of shock is in for an unwelcoming surprise. My cousin Leanne, sweet girl was in for a horrible shock, when she found out that she had it too. It is not always a happy road that I am on, and I realize that. But I do understand how hard things could be. They get really brutal when such a lifestyle change is inevitable. If you have a positive result, they will recommend anti- depressants for a year, If you are having a hard time. I did it made a great difference, and I am still on them to this day. They will also make you see a psychiatrist as part of the process, and if you have a positive result. You will never be left alone.
The first of us Lisa, she had the best result ever, she does not have it. See if people get over the scariness of it, they might come to best result ever, non- positive for the gene. If those who test positive want children they can be gaurenteed a healthy child through pre natal scanning. In Canada it costs $10,000. Me and my husband are thinking of that option. Trevor wants a peice of me just in case HD "takes me".We can have natural births and scan. If it has it. We would need to abort it. Another thing with family members that don't get it, they have a great guilt, that worsens when you see the others in your family get sick, or more members of your family are positive. That's what happened to Lisa, I told her never feel guilty, cause it doesn't affect me much. Also told my Dad that too. People with mental illnesses that get a postive genetic test, are of great risk for suicide, hospitalization, and suicide attempts. You just have to realize, no result is worth your life. I had a friend kill themselve. You never realize how bad it is for the survivers. They will always feel the guilt for the rest of their lives. They will think of saving your life a million ways.
I will tell you what the Testing process entails. You have to get a hold of a genetist. You can look online, or if you have family connections, you can get a hold of them that way. Thatís the best way through family, cause they already know you. Thatís what I did, and they had already seen me and my brothers before. You call them arrange the first appointment. Thatís when you meet the whole team. They inform you about HD, and the testing process. Then next you meet with some workers, they take your blood. Your next meeting is with the psychiatrist, to see if you can handle it. I saw him 3 times before I was done. Finally you are given your results. The whole thing takes 4-6 months. If you are positive, then you will see the whole team once every 6 months. My cousin was the youngest to get tested. I was the second. They were hard on both of us.
There are three categories for testing:
Prenatal testing, either amniocentesis (a sample of fluid from around the fetus), or chorionic villus sampling (CVSóa sample of fetal cells from the placenta), will indicate whether the baby has inherited the gene for Huntington's.
Confirmatory testing determines whether a person showing what appear to be the symptoms of HD, actually has the disease. Neurological and psychological tests are also conducted to arrive at a conclusive diagnosis of Huntington's Disease.
Pre-symptomatic testing is available to people who are at risk of inheriting Huntingtonís Disease from a parent, but donít have symptoms and donít know whether or not they carry the gene.
Iím going to explain why everyone that has the 50/50 chance should get tested. It affects you future in so many negative ways if you put off. Just the way you live your life constantly wondering: Do I have it? Do I not? They will always haunt you. Instead of just knowing what you exactly have to face in the future. You can know whether to have a family or not. Can you imagine bringing infected kids into the world? Thatís my Grandpa Budd's worst fear. That should be everyone worst fear. Another thing it affects negativly is Career/ School. What if you chose a long term goal, or go to school and pay all that time and money in something, and start getting sick? Can you see the negative effects? Also, if you find out soon you can get all the appropriate treatments earlier. They will do more good that way. The sooner the better.
I got some tips from my positive experience in dealing with it positively.
Get Life Insurance. You won't get coverage if you get HD
Plan about future career/school plans, you will need several options for whatever result you get
Just have the thought that no matter what the results, you will live your life the best you can
Try to have fun in the process, hang out with family, friends; donít get caught in depression or negative patterns that make it harder for you
The results can cause psychological issues, leading to significant depression or anxiety. For those who have a good support
Some may want to confirm negative test results to make it simpler to get insurance. Then there are others who want to know if theyíre HD positive and then be followed closely by physicians and also be first in line for drug trials.
A diagonsis of HD does not mean your life is over. It has begun.
Plan for both good and bad results, that way you canít go wrong