Huntington's. HD. Used to be called Huntington's Chorea when I was young.
At 6 yrs old I was my Mum's carer and at 16 I would have been an orphan if I hadn't been adopted. As it turned out my Mum was symptomatic before my sister was born but I didn't realise it at the time. Eventually Mum's condition became too much for me to manage even with support. When she was hospitalised I got my childhood back but lost my Mum, even though we went to visit her, I'd lost her.
My family have early onset Huntington's. Symptomatic in early to mid 20's with life expectancy was 42 yrs old. Ours isn't the earliest onset or the earliest age of mortality. Although later onset is considered more the "norm".
I'm 68 my sister is 64. My mother died just before her 41st birthday. Her father died age 42 and 2 of his siblings died of HD in one in their late 30's and the other in their early 40's. They were a family of 10 children so 5 should have had HD not 3.
My mother was one of 5 siblings and the only one to get HD. Two are still going strong, age 98 and 87. Mum's eldest sibling died age 85 after a stroke and the 3rd eldest had an aneurysm, also in their 80's so the 50% didn't always work out either
I don't have it, my sister doesn't have it and our kids don't have it. Sis and I are too old to have it and the youngest of our kids is also too old to have it.
I was past the age of mortality before the test was available but my sister had one of the early test - negative thank goodness. In reality she was also past the age of being symptomatic but was tested as part of the study.
So is it right to have a child if you know you have HD who knows?
The couple are brave and from reading the article they are as prepared as anyone can be and there is no shortage of Love but bottom line it is their decision and I wish them well.
I'm glad there wasn't all the knowledge and options available when I was young. I didn't have the enormous dilemma I'd have now regarding the to have children or not debate.
I have to say there wasn't much information available and things weren't discussed in our family or in the media so I never had the real soul searching that HD families of today have.
In fact discussion was discouraged in our family as it upset my gran, who lived with us. and who had lost a husband and a daughter to HD.
By the time I had my first I was it was reasonably clear to my family and our GP that I wasn't symptomatic so there were no objections or questions about the rights or wrongs of having children. Our GP diagnosed my Mum and stayed in touch with her even after she was hospitalised so he had as good idea of what was what as anyone I had access to at that time.
Looking back I gambled. With my second more was known and I was symptom free so much safer.
I do vividly remember in my late 20's early 30's having a persistent worry about getting to 42 before I could really feel safe. Because as time went on, studies came out and testing was on the horizon I realised I'd taken our GP's encouraging words as gospel that all would be well. I began to realise that I'd gone into parenthood with blind faith or outright stupidity and nowhere near the diligence I should have applied.
Thankfully all is well, my children haven't had to watch my deterioration or care for me the way I had to for my mum.
But she was and always will be my Mum - more - so much more than Huntington's and I'm glad for every day I had with her.
My sister and I are so very lucky. HD is dead in our family.
We won the gene lottery. The Savage gene is no more in our family.
Other families are not so lucky. Those who have to face the prospect of getting HD or passing HD on are really the only people who will have to make the difficult choice irrespective of our opinions.
I have a saying about opinions but here isn't the place so I'll leave that for now.
I wish anyone facing difficult decisions, support and understanding, and the very best of Luck. Because we all need some Luck in our lives.
allsortsofbags
