Expert Q&A: Rare dementias - Tues 3 March, 3-4pm
Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.
You can either post your question >here< or email them to us at email@example.com and we'll be happy to ask them on your behalf.
I think of all the wasted money spent on wars and it makes me sad.You say your mother was adopted. I assume due to the rare nature of her condition they will link you to one of these nine families.
I watch all the money spent on the Olympics and think of the good it would have done used to help medical research. I know people enjoy it but it doesn't stop me feeling our priorities are messed up.
Hi, I can see the thread is rather old, but I am currently about to make a decision on whether or not to be tested for FTD. I have been considering it since we got my mother's test results, but since I suddenly (not planned) got pregnant, a sense of urgency has evolved. Given the thread is a bit old, maybe some of you have been through the testing and can give some feedback on how to cope with the result - no matter if it is good or bad. I'm quite scared of how it would affect me if it turns out, that I carry the same mutation as my mother. Her illness is progressing very fast, but it was not diagnosed until quite recently, so I am also dealing with the sorrow of losing my mother to a person I do not know. I wish I could discuss this with her, but she is already completely distant and even though I have great close friends and a supporting partner, I feel all alone.
So, if anyone can share some experience with actually receiving a test result - and also reactions from close friends and family - I would be very thankful.
I bought a fitbit to monitor my heart. Now I have it I don't know what to do with the recordings, I'm not a doctor and don't know if anything on it is normal.If I was offered the test I don't think I'd want to take it, I'd have to live the rest of my life with the sword of Dementiaclese hanging over me.
We're all at risk of getting AZ and a family link can elevate the risk but having the faulty gene doesn't mean you will get AZ and not having the gene doesn't prove you wont get AZ anyway there's a hundred things out there that may get you before AZ.
There are some things I would get tested for like the breast cancer gene (not me personally being a bloke) but I can see why that makes sense as you can be vigilant and so get treatment earlier, the big one is blood pressure, heart disease and strokes are major killers but how many of us regularly get their BP checked?
I wish you well but it's not for me I'm afraid.
Hi, I'm very sorry you're going through this, I had a genetic test and I carry the mapt 10+16 gene and all I do is worry about my children 's future, but hopefully in 30 years there will be a cure for it. I'm 46 years old and my children are 10 and 6 years old. I went for the test because I'm near the age of onset, if I was younger I don't think I'd want to know. But since about 5 years now they are able to take it out of the embryo so your child wouldn't have it and they can do it without you having to know if you carry the faulty gene, if this would of been available before I had children it would of been a massive relief. I have been told it can affect things with insurance and mortgages also. The genetic counselling usually advice you about this.Hi all, I know this thread is now over a year old but in a similar situation my dad has been diagnosed with behavioural variant FTD and has the C9orf72 gene mutation. I've started genetic counselling (more as someone else said discussing the pros and cons) and I soon have my next meeting where I should decide where I do want to take the test to find out if I carry the gene mutation, I know I can push back the meeting but I'm soon to be married and we want kids so the knowledge will help us plan our future, particularly as I wouldn't want to pass on the mutation if I had it. There are lots of pros in my eyes, as on top of the above, it will help me decide how I spend the next 10/20 years and make me reevaluate things, and if there are any studies coming up I'd be on the studies where possible. I'm concerned about the cons though, that I don't know enough about them, apart from the obvious having to deal with the knowledge mentally, I know there is currently a moratorium in place re: insurance companies asking you whether you've had genetic testing, but the counsellor couldn't say whether it would affect mortgages and would need to discuss with a solicitor when we wanted to sell / buy / renew our mortgage. We are definitely not in our forever home at the moment. Does anyone have any experience of having the gene mutation?