skip to main content

Listen

Read

Watch

Schedules

Programs

Events

Give

Account

Donation Heart Ribbon

Avatar for HopeDignity

( HopeDignity )

Comments made by HopeDignity

Huntington's Disease

AuntJenny, HD positive result is like your life has already been taken away from you. On top of that you add another imperative of not having children. No ignorant procreation, you say. In most of the cases it is only this ignorance that allows people to build their own future and to live this little time they have.

For most of the young people there is only one drive to undergo a test: they want to receive a negative result, a pass to the "normal" life. They are not ready for the other option. That’s why there are so many suicides amongst young people that are positive. Imposing such a restriction on them makes us responsible for all the consequences.

I don't believe in any general rule that could apply to every person that is HD positive. Our choices have to be individual. Maybe more informed, but still not imposed by any general imperative. We are capable of making conscious and independent decisions. The predictive test doesn't sentence anyone to giving up on their lives.

What really speaks to me, is an example of dr. Nancy Wexler. She and her sister were very young when they found out that their mother had been diagnosed with HD. Aware of all consequences they decided not to have children. Nevertheless, dr. Wexler has never publicly declared if she had the blood test herself and she believes that only the individual can decide about it. This is what I consider respectful and inspiring attitude. There is both an example of personal involvement and also some space for a person to decide himself.

AuntJenny, we acknowledge that we are affected. We would do everything to eradicate the disease. But we should never agree to your proposal of the solution to our problem. It doesn't make us ignorant in any way.

HD is not the sole horrible disease. But most probably the people have some kind of genetic disorder or some predisposition toward certain diseases. We have to accept the fact that we are not perfect. And we need to find some other solution to the problem. Before somebody knocks on your door telling you that you or other members of your family should not have children because of some incurable disease.

AuntJenny, I don't doubt your professional skills. I do believe that you take a good care of your patients. But I needed to oppose to your thesis strongly. I am glad that you allow discussion. I am sure you understood at the first place how controversial your statement was.

May 24, 2010 at 7:48 a.m. ( | suggest removal )

Huntington's Disease

I belong to quite rare species: there is no pain/anxiety/anger or any other negative feeling involved in living with HD in my case. I wouldn't get diagnosed if I was driven by fear. The disease has been in my family since I was a kid. It's a part of my legacy. I will survive even if there is no cure for my generation. I'm not glamorizing it; I just don't agree that living with it is any worse that living with any other disease or living your life healthy. We don't choose. Maybe if we could choose my feelings would be different. Life with HD can be filled with hope and dignity.

Of course most of the people in my situation are paralyzed by fear. It's better for them not to undergo testing at all and just their lives pretending that it doesn't affect them as long as they can.
If we talk about the ethics in HD, there are some guidelines for the professionals. The main and the most important is that the decision to take the pre-symptomatic test should always be an informed, carefully considered and freely chosen personal decision. Under no circumstances should an individual be coerced into testing.

Generally people who express their desire to undergo the test often have to convince the neurologist and psychologist that they are really ready for this decision. Knowing only this and for example the fact that there is no testing for asymptomatic people under 18, you could draw your own conclusions that the test itself is not for any affected person. And the decision should be reconsidered many times.

AuntJenny, I’m not hostile towards you, though I will insist on my first impression of you: a person that observes the final stages of the disease and doesn’t have any idea of what life with HD really is. I believe in your case "compassion" is too noble word, more suitable would be "pity" as it has its roots in fear. And hopefully the one that will be changing my diapers and feeding me pureed meals will not be a person with your attitude, because it would really make the disease unbearable.

May 22, 2010 at 4:22 p.m. ( | suggest removal )

Huntington's Disease

CONGRATULATIONS, AUNT JENNY!

You've managed to solve the riddle that remained insoluble for so many researchers for more than three decades. Your mission is to make this world better and to bring light to people like us; YOU SHOULD BE AWARDED NOBEL PRIZE IN GENETICS. Hopefully soon you will also provide us with preventive measures against poverty, hunger and wars in the world so we can award you with Nobel Prizes in economics and peace.

The only thing that escaped your attentive mind was that WE ARE HUMAN BEINGS.

Jonas Salk is probably turning in his grave at the way you compare the discovery of vaccine against Polio with your proposal of eradicating the disease. If we want to eradicate the disease at any cost, why don’t we consequently follow your directions and drop a bomb on everything and eradicate not only HD but also Alzheimer’s disease, AIDS, Polio and many more diseases and we don’t even need to wait for two generations.

Would I like to eradicate the problem of HD? The answer is YES. But not at any cost.

Hopefully a cure will be there soon, so we will avoid this type of arguments. The only thing that is clear for me after all these discussions is why people at risk find it so difficult to undergo testing. The news of being positive is always so tragic and it takes so much courage to come out of the closet. If they decide to raise awareness about the disease - this is what they get in return.

TOO LATE FOR ME, BUT MAYBE IT IS BETTER NOT TO GET TESTED AT ALL?

May 21, 2010 at 5:56 a.m. ( | suggest removal )

Huntington's Disease

AuntJenny, I'm really happy to hear that your reasoning is driven by compassion and not by hatred or lack of understanding. But this completely rational stand of yours is the result of seeing only the final stages of the disease and most probably that is why your perspective must contradict my personal experience.
We all agree the deterioration of human body in HD is the most difficult problem and that most of the people are not capable of taking care of a patient at this stage of the disease.
But if you decide to stand by their side, and it really takes courage, compassion and love to overcome our own vulnerability, then the whole perspective changes.
I used to take care of my grandma and now I am caregiver to my mom and I will always remember them the way they used to be and the way they have influenced my life.
And life with the disease is not by any means worse than life without it. It's different. It may be even more profound and more conscious.
...Though sometimes I feel like Alice in Wonderland when someone tries to push me to follow directives made up by people who have never lived their lives the way we do. I am capable of making my own choices in life. So even if I believe in your good intentions, I will always demand from you to respect my own free will when it comes to my life choices. And I will even respect your point of view as long as it is not categorical.

May 20, 2010 at 4:33 a.m. ( | suggest removal )

Huntington's Disease

I'm 33, HD positive. I never desired to know anything about my genetic status. If I'm affected, than there is nothing I can do about it, except hit my head against the wall. Being a caregiver to my Mom is the most important thing at this stage of my life; I didn't know how this knowledge would affect our relation.

But I felt that I wanted to have a baby and it seemed like the last moment to decide whether it's possible; that was the main reason I finally decided to go for the test. The first thing I felt when I received my result was kind of a relief that at least I don't have to worry about another human being in my life. Many people like me try to commit suicide when they find out that they are positive, so maybe this way the disease to be wiped out from the face of the earth. That’s why I am against testing without prior consideration.

So, AuntJenny, following my life choices you would probably think that I agree with you. If you got this impression, you got it totally wrong. Everyone is responsible for his own life decisions. We cannot eradicate HD by vasectomy. The times of Hitler's chancellorship are fortunately long gone. I think that insensitivity is worse than any genetic disease. But at least it's not uncurable if you try.

May 19, 2010 at 3:23 p.m. ( | suggest removal )