I plan to dump the love of my life because of my diagnosis
DEAR DEIDRE: I’ve just been diagnosed with a fatal, hereditary illness that will probably kill me before I’m 50, and I’m terrified.
My mum died of it, and my siblings and I have all just been tested, but I’m the only one who’s got it.
I’m 25, and my mum died at 55.
My disease is called Huntington’s. Although I don’t have any symptoms yet – they usually start after you’re 30 – my diagnosis has turned my world upside down.
I’m at the start of my career and have recently fallen in love with a wonderful guy, 28.
Now I feel like I have no future, and that I should break up with my boyfriend because it’s not fair to burden him with my illness.
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I don’t want him to have to watch me deteriorate and die, physically and mentally, like my mum did.
And if we were to have a child together, they would have a 50% chance of having it too. I can’t take that risk.
The more I read about the condition, the more scared I feel.
Eventually, I won’t be able to walk, speak, swallow or think properly.
My friends are all out having fun, going travelling, planning their futures – but I don’t have one.
I can’t talk to them about it because they don’t understand.
Everything seems hopeless and pointless. Please help me.
MORE FROM DEAR DEIDRE
DEIDRE SAYS: To be diagnosed with such a terrible illness at your age, having watched your mother die from it, is almost unbearably cruel.
But please don’t give up.
The future may not be as bleak as you fear. Scientists are developing new drugs which can slow down the progression of Huntington’s, and extend life expectancy.
As for having children, there are methods that can make it possible not to pass on the gene to them too.
It’s not fair to break up with your boyfriend without giving him the chance to choose for himself whether he can cope with your illness.
He may decide he wants to be there for you, regardless, and deal with this together.
Talk to him. But before you do so, please talk to the Huntington’s Disease Association (hda.org.uk, tel: 0151 331 5444) who will understand what you’re going through and give you support and guidance.