My Huntington’s Journey, from Childhood to College

My Huntington’s Journey, from Childhood to College

Growing up, the fact that my grandfather had Huntington’s disease (HD) wasn’t a secret. It was the reason that, when we drove to Pennsylvania to see my family, we had to pull over to feed him through a tube. It was also why I watched the man who would play Monopoly with me when I was sick slowly disappear.

He was the closest thing I had to a father as a child. He was patient and caring, but over the years, his patience disappeared. He stopped trusting what he felt, and his emotions became volatile. I knew for years that his death was coming, but I will never forget the day I found out that he had passed away.

I knew growing up that because my grandfather had the HD gene, my two uncles and my mother had a 50 percent chance of inheriting it, meaning I had a 25 percent chance. That seemed a relatively small percentage to some people, but I often functioned as though I had it. For me, a 25 percent probability was enough to decide not to have biological children of my own.

My mother and I are ridiculously close. She raised me for a large portion of my life as a single mother, and I’m practically a miniature version of her. We are so alike that growing up, my name was LJ — Little Jill. Although I may have functioned as though I had the HD gene, I hadn’t really contemplated how I would feel or what I would do if my mom tested positive.

I found out the hard way last December when I was home on break. My mother was suffering from depression and anxiety, the first symptoms of onset, and she decided to get tested. The news was devastating to me. I immediately flashed back to watching my grandfather slowly disappear, and I still cannot fathom how I’m supposed to handle the same thing happening to her.

The news of my mother’s diagnosis also strengthened my desire to get tested. I had contemplated getting tested in the past and even reached out to a researcher at the university I was attending. For me, an unknown is always worse than the known. You cannot do anything about an unknown; you cannot take action or even mentally prepare. However, at the time, had I tested positive, I would have been giving my mother a diagnosis as well. Now, that possibility was no longer stopping me.

My parents reached out to a social worker at Beth-Israel Hospital in Boston to help me set up an appointment for the testing. They do HD clinics on the first Monday of every month, which was highly inconvenient as I had class from 9:30 a.m. to 10 p.m. I ended up picking a class to skip and scheduled my appointment for April 1, which was a much more acceptable date for the blood draw than for the results.

At the appointment, I felt as though I were being put on trial. I was forced to continually defend my reasons for getting tested; it felt like they would reject my request if I didn’t give a satisfactory argument. I then had to wait almost a month to get the results.

On April 26, I went back to Beth-Israel with four amazing friends who insisted on accompanying me. As we walked into the social worker’s office, I knew the results before they told me: I have the HD gene. The genetic counselor’s first question was how I was feeling. I responded, honestly, that I was hungry. The results were by no means good news, but it was just a confirmation of what I had thought for so much of my life. It also didn’t change anything in my life at that moment. I was still going to graduate, move into an apartment, and start a new job. And on the upside, I could better plan for the future and start saving money for the medical expenses I will incur later.

While I’m only 22, I have lived with this disease long enough to know what it does. I went from helping take care of my grandfather in elementary school to having the knowledge that I will personally struggle with this disease. Sometimes it feels like it’s just a nightmare that I will wake up from at any moment. Sometimes it takes my breath away. Sometimes I look at the amazing support around me and feel like I can get through anything. This disease has been, and always will be, a part of my journey.

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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 Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.

Alexus Jones Author
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Alexus Jones Author

2 comments

  1. Deb says:

    Hi Alexus,
    I linked to your article from your dad’s column.
    He said… Welcome to our “wonderful, beautiful, kind, brilliant daughter” I’m quite certain he nailed it.
    For a 22 year old to be tested for Huntington’s disease, and then to go on and write an HD related column, the one word that comes to my mind is courageous. I am beyond certain that you don’t view yourself as courageous. That is OK. I get to choose my own adjective. You will be an inspiration to others as they come to find out a family connection, or perhaps their own diagnosis of
    Huntington’s disease. For me, I am looking for ways to support my BFF as her symptoms become more pronounced.

    • Alexus Jones says:

      Hi Deb,
      I appreciate your comment. You’re right, I don’t see myself as courageous. Yes, it can definitely be a bit scary putting my life and thoughts out like this (especially since my first name is spelled in a unique enough way that this is easily linked back to me). However, my hope is that I can make someone in a similar situation feel like they aren’t alone.
      I think it’s really wonderful that you are doing research on how to support your BFF, that in itself is very supportive.
      Best,
      Alexus

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