Stuggling to decide if i should have a baby?

[Rowan88]

Hello,

This is my first time on this forum. My father has early on set alzheimers (aged 57). I am 30 and my husband and I had been planning on having a family this year.

I am now terrified that not only I may get the diease, but I could pass it on to children?

I have an appointment with the genetic department this week, however my parents do not know I am going down this route. My Dad is stuggling to deal with his own diagnosis let alone consider the chance my sister and I could have the disease.

Does/ has anyone else been in a similar situation. what advice did you recieve?

Many Thanks,
Rowan

 

[marionq]

You are doing something courageous in facing up to your possible heritage. There are many things to consider and you still have time on your side when making a decision.

Very best wishes.

 

[Grannie G]

Hello Rowan

Please don`t miss out on having a family `in case`. There are dozens of `in cases` in life but they may never happen.

By all means keep your appointment with the genetic testing department to put your mind at rest but unless you are told you are high risk for dementia please live your life as normal.

My son is 53. His father, his grandmother and grandfather all had dementia. He is absolutely fine and has three children . He has not had genetic testing and neither have I. Both my parents had dementia. I am 75 and still going strong.

I know your dad`s diagnosis will have been a shock and a scare. Do what you need to do and I hope the testing will put your mind at rest.

 

[carrieboo]

I would absolutely echo Grannie G's post, you are still young and even if (and it's still unlikely) there's a genetic link there may well be a cure or treatment by the time your children are in their 50s.

One of my best friends was diagnosed with aggressive breast cancer on her 50th birthday, she had a double mastectomy, chemo and radiotherapy. Her youngest child was 6 and the prognosis was terrible. She'll soon be celebrating her 67th birthday and planning a major house move. She has seen her youngest graduate and become a grandmother 6 times over since then.

Nobody can predict the future, we just have to try face it with confidence and hope

 

[carpe diem]

Hi. My family have genes causing late onset. I chose not to have children partly because of concerns about genetics. I never had a big desire to have a baby and now I'm 50 I'm more than happy I have no children and it was the best decision for me. I've also discovered recently that I don't have the same gene as my mum so my risk of Alzheimer's is lower than average.
My sister has 2 children and she doesn't know if she has inherited the APOe4 gene or not. Obviously it's a 50/50 chance she has the gene and has passed it on to her children and it does effect her life.
It's been really tough living with a lot of Alzheimers in our family. It's effected us in almost everything everyday.
However we are in our 50s now and you are much younger the chances of a cure in the next 20 are huge. By the time your children are middle age I truly think there will be big advances and no one will have dementia symptoms.
I believe there is already drugs proven to reduce the symptoms of dementia but at present the side effects cause brain swelling. A good treatment is expected to be available in within 10 years.
Of course you only have a 50/50 chance of inheriting the gene and a may be lucky like me.
I spent most of my life worrying about getting Alzheimer's and it's depressing. It has been life changing to discover I don't have the gene. However I was fortunate to discover other clues before I was tested and was fairly sure I was going to get a good result. It still caused me a lot of worry, anxiety and sleepless nights.
Knowing what I know now I wouldn't advise anyone to take a genetic test for EOA. I know living with a 50/50 chance is hard but if it's not the result you want I don't think you can know how hard it will be and no amount of counseling will prepare you.
I remember another post on here from someone who took the test for EOA. He was adamant that he was prepared for the result but it came back positive and to say he was devastated and unprepared is an understatement. No one can really be prepared or think they know how it will effect them and there family.
Everyone is different and some results are good. But my uneducated advice is don't have the test, have babies if you want them live your life to the full everyday and hope for a cure.
Many best wishes with whatever you choose. There is no right or wrong.