As I mentioned in my debut column of “Negative to Positives” a couple weeks ago, I have a genuine passion for helping those undergoing genetic testing for Huntington’s disease, which is an incredibly challenging life hurdle.
Many members of this community watch their parents slowly and progressively decline, and then must look in the mirror and wonder if their own future holds the same unfortunate fate.
People outside the Huntington’s community might think that getting tested is a no-brainer. Why wouldn’t someone want to know whether they will get Huntington’s? This question may seem simple, but actually it is quite complex.
With many other rare genetic disorders, people may seek a diagnosis because treatments can halt disease progression. But with Huntington’s, as one observational study noted, about 90% of those who are at-risk choose not to take a genetic test. Essentially, participants were saying, “Why learn about a possible life sentence when there isn’t much one can do about it right now?”
Getting tested is an incredibly personal decision, but I do think it can be simplified a bit. And regardless of available treatments, I believe a positive outcome is possible, regardless of genetic inheritance.
From my experiences, including my own testing process and the testing of others close to me, I think the chance of a positive outcome after testing depends on having a prepared mind.
What do I mean by that? A prepared mind has thoroughly thought through the many angles and avenues that both a positive and a negative test can take you down as an individual.
This isn’t like a high school test or a big work presentation you can expect short-term success from by cramming for it in a short period. I see this cramming strategy a lot in online Huntington’s chat groups. Many learn of their at-risk status after they are adults, so they’ll immediately seek out Google MD and Facebook chat groups, and then speak to their general practitioner. Often, they’ll feel prepared within a few weeks to face the Huntington’s coin toss.
On the surface, this person may know much more about Huntington’s than they did a few weeks ago, and they may feel like they are ready for whatever result comes at them. But I don’t believe this is an example of a prepared mind.
I was only 23 when I went through with my genetic testing, and I can say with certainty that I wasn’t the smartest, wisest, or most mature mind in the room. However, I feel confident in saying I was 100% prepared to receive my results.
Since the ripe age of 10, I attended local and national Huntington’s fundraisers, support groups, and education days where I was able to absorb information, connect with others, and build an army-like support system. I had the opportunity to digest information and think carefully and strategically about my future — with or without Huntington’s disease.
Ultimately, I was able to prepare my mind to visualize a future down one of two paths. Path A was life with Huntington’s, and Path B was life without it. Clearly, these two paths were different. They involved different education, career, and life choices. But my mentality for the future remained the same. Regardless of the path that my genetic makeup had in store for me, I would live happily because I had prepared my mind for both paths. I was OK walking down either one.
I understand that my situation is unique to me. However, I have seen many young people who are at risk get tested, and it’s easy to tell who has a prepared mind and who quickly crammed in the knowledge. Those who are prepared take their time. They connect with others from all angles. They are engaged in the Huntington’s community well before they decide to test. Nobody wants to receive a positive test result, but I believe that those who are prepared will have a much more positive outcome, regardless of the result.
If you’re still at-risk for Huntington’s, take your time to prepare your mind for what’s ahead. There are many easily accessible resources available (such a HDYO, HDSA, and NSGC). Speak with a genetic counselor. Speak with others in the Huntington’s community. Connect with the proper resources. Talk to those around you who also will be affected. Talk to yourself. Take your time to absorb all the details.
Think through your two paths. They won’t be the same, but you can prepare your mind to accept both of them and live a full life, whatever is in front of you!
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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