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Hope Dignity Awareness
Huntington’s Victoria is the leading specialist service that supports individuals impacted by Huntington’s disease.

Chronicles of Kylie: Why the secrecy around HD?

I would sincerely like to thank my mother for not following a doctor’s advice. When we were kids, she had taken us to see a doctor at Canberra Hospital for a routine check-up. She was given standard forms to fill in. She filled in our medical records, including the details about our family medical history and any pre-existing conditions.

In one box she had filled in the detail that my grandfather, my father’s father, had Huntington’s Disease (HD). When the doctor read through our medical records, he advised mum that the best thing to do would be to have us sterilized; that is, to make it impossible for us to have children of our own.  

What a shocking thing to say to a proud mother. She was very affronted by him and his advice. I can imagine her giving him a piece of her mind. At that stage my father had not yet been tested for  or diagnosed with HD. Her fury probably made her even more protective of her girls.

Thank goodness my mother didn’t take his advice, otherwise my sister would not have been able to give birth to her three healthy, amazing children and we would not have had the joy of being their grandmother and aunts.

I would also thank my mother for not sharing the doctor’s opinion with me at the time. Instead, she waited until I was a teenager and better able to deal with that information. The word ‘’sterilize” has reverberated in my brain for a longtime…and occasionally still turns up in my thoughts. It has shameful connotations to me that suggest that I am somehow faulty, unworthy, abnormal, damaged, not good enough and am in danger of infecting others.

I felt as if I had been tagged as DIVERGENT and I am still waiting to be rounded up with the other divergent people. I felt that in order to protect myself I needed to learn how to blend in with the regular people.  

With this kind of discrimination, from even the medical profession, I understand why it remained our secret for a long time. Every day I ask myself who is trust worthy with my medical information and who is going to use it against me in some way?

Medical information forms at the doctors office are not the only places where medical information is collected, collated and assessed. Insurance policies are only one example, where you need to specify your medical information. It is pretty standard for the second question to be, “do you have any pre-existing conditions?” Having to answer “yes” to this question precludes you from the majority of insurance policies. Job applications ask you about your health as do the majority of forms that you are required to complete.  This prejudice often makes me feel like I am discounted as person. 

In my opinion we need to develop more inclusive policies and practices for those living with chronic conditions like HD.

For more information on telling others about HD, including information on genetic discrimination, you can download Huntington’s Victoria’s information sheet or contact them here.

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