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CutieHootie

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Country
UK
State
Cornwall
City
St Austell
My husband has a history of mnd in his family. His mother, auntie and brother having all had this horrible disease and sadly passed away. I think his grandmother also had this disease.
They have identified the gene alteration that is causing this in his family using his brothers DNA; its FUS. I dont really know much about this gene but his counsultant firmly believes that is what has caused this disease.
As a couple we have decided to test my husband for this gene alteration. We understand that he has a 50/50 chance of having the same gene. Our consultant also advises that if my husband is tested postive for this gene then he will definitely have this disease at some point, the question is when and not if.
The reason why we want to find out is because we really want to start a family having been married since September.
Looking back at his family history, the members of his family that have had the disease have lived until they are in their 30's to ealy 40's. My husband is 36 years old so this is obviously a big worry for me.
We are getting the results on Weds morning. Really scared about this and dont know how I am going to react if we have bad news. My husband is quite nonchalant about the results...he just wants to know! He said he has lived for this disease in his family for most of his life so hes already been through the anger and tears whereas I am a nervous wreck! It feels wrong that I am the one crying all the time and he is supporting me; surely it should be the other way round?
Sorry about the long post, just had to get this out of my system!
 
Welcome to Heartbreak Hotel. Hope you don't have to stay.
 
CUTIE: It's not backward at all.

Tears come from loss or stress, and you're facing both. He's already absorbed the possibilities. He's thought about his own death for many years.

My kids also have a 50/50 chance of inheriting a mutated ALS gene from their mother (RIP). I've processed this information completely, so I'm more calm about it than I used to be.

Sorry if my words are not emotionally supportive; I'm a very practical type. Before he gets any diagnosis, get life insurance to the max. Consider taking a small vacation during Christmas to give your mind something else to concentrate on. Stay busy. Good luck Wednesday.
 
Very sorry and crossing fingers and toes for you. There is a Face Book group for FALS. Hope you don't need it but there are a lot of people who have the same concerns there.
Ps I love Cornwall. My family is from Falmouth area
 
Thanks for the kind words, I'm feeling a bit stronger today.
I shall look up this facebook group, thanks for mentioning this.
I shall keep you updated with the results
 
Good news :) My husband doesn't have the faulty gene so he won't pass it on to any children.

We are extremely relieved, was prepared for the worse to be honest.

It's not over though, still worried about what the future holds for the extended family as his brother had 3 children so they are all at risk. Also his auntie also had children so there is still a dark cloud hovering above us.

My husands nieces and nephews are unaware at the moment that there is a test available for the family. We have a duty to tell them but its going to bring up the horrible past again.

xxx
 
I am so happy to hear of these results
Talking about testing is very hard I know. I have done it as well
Best of luck
 
My hubby will be tested next year as he has a first cousin with MND , we are giving the kids a chance to get their insurances in place before we go ahead with testing.
Very pleased for you and hubby.
Love Gem
 
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