Here is the paper I wrote on my results: The Consequences of My DNA Test
In the final analysis, from a logical point of view, I suppose the test results are not as important to my day-to-day living. Regardless of a positive or negative result, I will still deal with financial, personal, and all other issues of life for as long as I can. The financial aspects would change in preparation of impeding health care costs, but logically, those costs could come regardless of my genetic status. There are, of course, other implications. If found to have the gene: This would first confirm my belief that HD is diagnosed later than actual onset. In both of my sister's cases, the neurologist would not diagnose what was obvious to anyone in the HD community. I do believe there is a reluctance to diagnose this disease. I think neurologists are weary of diagnoses until they are absolutely positive. I don't blame them; they don't want it to be there either. Realizing that a positive result only says that you will get HD and are not necessarily symptomatic is somewhat of a mute point with me.
The fate is the same and has to be reckoned with, accordingly. To accept the diagnoses of not being symptomatic but having the gene, to me, is denial. That is not how I would want to approach this challenge. I choose to be in a combative mode for as long as possible. This meaning: arming myself with as much knowledge about the disease as possible, being a healthier person (which I should be, anyway), keeping very up to date on advancements and treatments, and participating in support groups.
The theory here is to buy as much time as possible in hopes of effective treatment. On this note, I must say, I don't believe there will ever be a cure for HD. I do believe there is a definite possibility of effective treatment and perhaps even a chance to stop progression. In the era of the brain, much advancement has been made. Now, with the links between Parkinson's, Alzheimer's, Huntington's and strokes being established, there is true incentive for companies to escalate genetic therapy and pharmaceuticals. I believe these treatments will be available in my lifetime! I would not have said this 10 years ago.
Secondly, a positive result affects my relationship with Tessa. I would have to depend on her for support. I would have to rely on her for decisions on drugs, financial matters, and what is best for the two of us. My contribution to the relationship would slowly decline as the disease advances. She would have to endure a lot. Her family, my family and friends would be affected. The ripple effect would be in full force.
