I have a lot of sympathy for Charlotte Raven: like her I was diagnosed with Huntington's disease in To be or not to be? But I was dismayed by the tone of her article and in particular its introductory paragraph, which read: "When Charlotte Raven was diagnosed with Huntington's, an incurable degenerative disease, there seemed only one option: suicide. And what about the consequences for her husband and young daughter? In the article itself, Charlotte says: "There is currently no cure for Huntington's disease. Unsurprisingly, Huntington's patients often suffer from depression. I was surprised it wasn't more," she says.
If you require specific legal advice about something that you consider possible discrimination based on your HD predictive testing, please contact a legal office for proper guidance. You have every right to keep your HD a secret. Your particular situation will influence your decision greatly. If you are in your forties, comfortable with where you are in life and with all your insurance and healthcare benefits set up and ready to go, then you may be more comfortable sharing.
Regardless of what choices you make, there are laws in most developed countries that prevent an employer from discriminating against someone in the workplace based on their positive HD testing. Doing so would be considered genetic discrimination.
Genetic discrimination is defined as occurring:.
Apr 22, "It has been called the cruelest disease known to man." This is how Lisa Genova, author of "Still Alice," introduces the newest neurological disorder she tackles in her new book, "Inside. Analysis of triplet repeats in the huntingtin gene in Huntingtons families affected with Huntington's disease. Huntington's disease-neuropathology. Handb Clin Neurol. Onjisaponin SOMEONE derived from radix polygalae enhances autophagy and accelerates the degradation of mutant a-synuclein and huntingtin in PC cells. My husband was diagnosed with Huntington disease in , although I have been seeing signs of the disease for at least seven years prior to that. He was 45 years old when diagnosed. We also didn't know it was in the family due to his father refusing to see a doctor for his unusual behaviors, moods, and movements until
As I mentioned above, most countries have laws in place to make this type of discrimination illegal, and for good reasons. Insurance companies would no doubt raise your premiums if they knew you were likely to develop some debilitating condition later in life.
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Below are two examples of laws in place to prevent this type of discrimination. Not only does GINA prevent insurance companies from using your genetic predictive testing against you, but it also:.
Canada, has been lagging when it comes to putting anti genetic discrimination laws into place. I learned very quickly, once I entered the in-between years, that there was no greater source of support than my family and friends. They are my foundation.
Dating during the in-between years can be, without question, a complicated and often stressful undertaking. Should you tell them on the first date?
Should you wait until the feelings are stronger? The best answer to these questions is likely this: not too soon and not too late.
Revealing your in-betweener status to a potential partner on the first date or so, may instantly build a wall between the two of you getting to know each other at all. Yes, you will need to tell them. But, give it some time. Learn about each other. Sure, you have HD. I lost it. He looked so helpless and somewhat ashamed.
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All I knew was that I was not going to cry in front of him while he was trying to enjoy a normal lunch, so I excused myself. My sisters were very strong and carried on the conversation with him to keep things light and happy.
Huntington’s Disease - Generations of Care and Search for a Cure
The other breakdown I had was when I got a call from my mom sophomore year of college. I was on a stereotypical week of Spring Break in Myrtle Beach. The second-to-last day there, I got a call from my mom that I needed to come home because we were going up to see my dad the following week.
No longer swallow? How is one meant to live like that? Is it even possible? This visit could be the last time I see him. Yes, it sucks. I hate knowing I could work my whole adult life to build a successful career, only to watch it quickly crumble out of my control.
Until any of my sisters or I know what out genetic results are, there is no end. Not knowing our results, for now, is as much of a resolution as we can get. So, my solution? Watching your year old dad deteriorate is a hard reality.
It makes me undeniably, incomprehensibly sad. I just feel sad. I know it sounds simple, but I feel that simply about it. Scanning through some of the comments on these videos it occurs to me that many young people have no idea who Michael J Fox is. We live in a world where people think it is appropriate to say whatever they like no matter how ignorant or hurtful. People hide behind the anonymity of the internet; this is not a new thing. People these trolls do not know personally who lost mothers, fathers, grandparents, brothers, sisters, or even children to this illness.
I should not be bothered by these comments, they are not directed at me, I do not know these people, but I am bothered.
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For more information you can read my 9th blog where I give an introduction to HD and how it fits into my life. Years before his diagnosis it was assumed that Guthrie was schizophrenic or an alcoholic. Many people who suffer from movement disorders slur their speech and stagger when they walk so many believe them to be alcoholics. For many like myself the two are permanently related in our minds. The HD community needs more visibility and awareness but in the meantime when I see somebody on tv moving in that very recognisable way I am reminded of those who I care about who moved in that same way.
As always a disclaimer: this blog is about my experiences and opinions.
I have a lot of sympathy for Charlotte Raven: like her I was diagnosed with Huntington's disease in (To be or not to be?, 16 January).But I was dismayed by the tone of her article and in. Oct 08, Huntington's Disease Support Group. Huntington's disease (HD), formerly known as Huntington's chorea, is a rare inherited genetic disorder characterized by abnormal body movements called chorea, and a reduction of various mental abilities. She told me it was like someone else was in control and I let my anger and insecurities push her away. Oct 26, Before I had my genetic testing to see if I had Huntington's Disease I had some very definite ideas of how my life was going to play out. I was seven when I found out about the Huntington's disease in our family. I was just old enough to have experienced the death of a pet and to understand that people sometimes get sick and they definitely get old.
I am not a medical expert. I do not know Mr Fox or his personal experiences or opinions and can not speak for him.
Mar 14, The decision to tell someone about your Huntington's Disease is an extremely personal one. Almost as personal as the decision to be tested in the first place. This can be even more apparent during the in-between years when you could be years away from any signs of the disease . I wouldn't like the thought of knowing there's a confirmed expiration date on our relationship/their life. I feel like that'd put a lot of strain on me. If I was already dating someone and we later found he had Huntington's, I wouldn't leave him over it. But I don't think I'd . By Nadia Khan. ated November 19, Reviewer Natalie Feinblatt. Huntington's disease is rare, but it is a terminal illness. It's probably difficult to accept, but if you or someone you love has been diagnosed with Huntington's, they will likely die from the disease or one of its symptoms.
I am not an expert on Huntingtons or Parkinsons. For more information please visit the following links:. I was just old enough to have experienced the death of a pet and to understand that people sometimes get sick and they definitely get old. Memories were a new idea and I was just learning to control my lanky young body to jump, run and climb without resulting in grazed knees and bruised elbows. I knew my grandfather was ill and we were moving to be closer to him and that one day mum would be sick in the same way.
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I wrote a diary entry the night before we officially moved. I only ever kept a diary when I felt most like being dramatic and in this particular diary I expressed my disappointment in moving again. Although I was glad to be moving to where both sets of my grandparents lived. I never wrote in that diary again.
My mother had her tubes tied not too long after discovering she was gene positive. My sister and I were aware of this even at such a young age and we grew up knowing that our mother would never have any more children because she did not want to consciously put them at risk. We were born before anyone was aware that there was HD in the family.
This influenced my own thoughts on having children if I were to find out that I too was gene positive.
It was made very clear to me that I should seriously consider all the options and consequences before I decided to have children. I needed to be aware of what it would mean to have children before I found out whether or not I had the genetic mutation. Many people do not undergo genetic screening and this seems so bizarre to me because for me there was never any other option. I always knew that I would get tested.
It was impressed upon me the importance of not putting my children into the place my sister and I accidentally were.
I vowed early on that I too should get my tubes tied if I was to find out I was gene positive so that I would never accidentally pass on the gene. When I was eleven my family moved again. This time we moved states, more than 8 hours south of where I grew up. We moved to an area where house and land prices were significantly cheaper so that my parents could buy a house and settle down before my mother became symptomatic. My mother had remarried the year before and our stepfather has become a second father to my sister and I.
Both my mother and stepfather found jobs in the area and I started my first year of highschool. I understood why we had moved so far from my comfort zone. I was wary of how I might have to do the same one day to secure my future when I became ill. I told myself not to get my hopes up or make plans because my life would be cut short. I knew early retirement was inevitable if I did have HD. I was convinced that I knew deep down that I would be gene positive.
But nothing was certain until I was tested and I had to wait until I was eighteen years old. Our mother has to travel three hours away from her home to the state capital to have specialist appointments regarding her HD. When my sister and I were much younger we would go with our parents to the city and met some of her doctors.
During one of these visits when I was about fifteen I asked if I would choose to be tested if I were allowed to at that age. I said yes. I wonder what that would have been like?
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But instead I spent the next twelve years wondering whether or not what my grandfather and my mother were going through would some day happen to me. I wondered if I would ever be able to have children of my own without medical interference. I told myself every muscle spasm was a taste of what my life would later be like. If I had known what I do now then I would have saved so much time.
I would have worried less and planned bigger and better things.