Risky Business

Alzheimer’s Disease is just drenched in stigma. It’s the leprosy of our time, the worst possible thing that could happen. Your hands will fall off, your nose, parts of you will drop to the ground, strewn about the landscape, and people will run away when they see you coming. No, they won’t even look at you, won’t see you because you’ll be living on an island that spares them the trouble.

Yes. Alzheimer’s has that kind of stigma. Mega-stigma.

It has so much stigma that, after each sentence, I want to say “I don’t have Alzheimer’s.” I don’t want anyone thinking my every lost key or forgotten name is a symptom in search of a disease. I’m as sharp as they make ’em, don’t you know.

Today, I got an email from a national Alzheimer’s prevention registry. This is something that I signed up for in one of my over-zealous moments about how I should do more about Alzheimer’s Disease because it killed my mother.

Participation in the registry begins with submitting a DNA test. This is so, down the road, the registry can match a person with a study or drug trial that, for instance, compares outcomes for people predisposed to Alzheimer’s to those not so unfortunate.

It’s all about the APOE4 gene. If you have it, your chances of developing Alzheimer’s Disease later in life are way higher than people who have APOE2 or APOE3. Way higher. I’d say radioactive but that would sound hysterical and that’s uncalled for this early in the game.

So I don’t know if I have the APOE4 gene but the registry folks do. I gave them my DNA, remember? And they’ll tell me if I decide to participate in the study described in the email. Wait, let me clarify. They’ll tell me if I have the high risk gene if I want them to.

I’m thinking about it.

6 thoughts on “Risky Business

  1. Pingback: Deep Winter Friday Round-Up – Red's Wrap

  2. It is a very frightening diagnosis — one of my building neighbors, 71, just got it. She is super-feisty, lives alone, very independent. I am so so so sad about this but spent this week tracking down some local resources for her (lawyer, care manager) and hope she will follow up.

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  3. Paula Lucey

    I was the head nurse of the unit caring for patients in the very early days of the AIDS disease. We had the same question. Many people did not want to know, at that very early point, it was not even known how it was spread. So not knowing was not considered a public health issue. Once Knowing meant something, like protecting others, or starting medications that could prevent more suffering, then people had to know.

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  4. I think I’d want to know. These days there are so many treatments that are more effective the earlier they are put into play. My husband’s mother’s two older sisters both were diagnosed with Alzheimer’s. One has died and the other is in the final stages. Neither had any idea that anything was wrong—they both were fairly isolated farm wives, so by the time diagnoses were made they were beyond receiving much help.

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