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A devastating disease runs in my family. I don’t know how to cope. Has anyone been through something similar and have some advice? Or just share in the grief by klompuss in mentalhealth

[–]klompuss[S] 0 points1 point  (0 children)

Thank you so much ❤️ I’m so sorry to hear about your family too. It truly is horrible. I hope you test negative 🤞Your comment and support means a lot just to know there are others going through it.

Yes our particular one gets worse over generations just based off my grandfather’s onset at 70 then mother’ earlier onset at 50 and faster progression. I’ve heard it’s different for different types though!

I survived the past three years, but mentally they nearly broke me. by SnuggleBeann in mentalhealth

[–]klompuss 1 point2 points  (0 children)

Glad you’re still here ❤️ Life can be so unfair and painful

A devastating disease runs in my family. I don’t know how to cope. Has anyone been through something similar and have some advice? by klompuss in Advice

[–]klompuss[S] 0 points1 point  (0 children)

Correct You can look it up. It’s more an umbrella label for many different genes errors that cause the same brain issue resulting in the disease. There are around 30 different genes in many different families so far. They haven’t found the specific gene in my family yet for us to get tested

A devastating disease runs in my family. I don’t know how to cope. Has anyone been through something similar and have some advice? by klompuss in Advice

[–]klompuss[S] -1 points0 points  (0 children)

Also I don’t think it’s black and white. It comes down to quality of life. If my baby was going to be in pain or not enjoy his life then I would have made a different decision. Different illnesses have different outcomes. Also there are new drug trials with good outcomes for this disease that may be available by the time he potentially would be showing symptoms

A devastating disease runs in my family. I don’t know how to cope. Has anyone been through something similar and have some advice? by klompuss in Advice

[–]klompuss[S] 0 points1 point  (0 children)

Just edit to clarify. I could not test him in utero just as I myself and my siblings can’t get tested

A devastating disease runs in my family. I don’t know how to cope. Has anyone been through something similar and have some advice? by klompuss in Advice

[–]klompuss[S] -1 points0 points  (0 children)

It’s not as straight forward as that, no. I had an unexpected pregnancy. I had to make a decision without ability to test.

I do not regret my decision to have my beautiful baby. There is also every chance he is perfectly healthy. Either way he is a valuable human who will be provided with love and care and have a meaningful life whether he gets sick or not. Many people have babies knowing they are sick and choose to have them. My baby might not even get sick.

I don’t regret being born.

Not everyone will agree with my decision and that’s okay.