Hey OP, i suffer from mitochondrial cardiomyopathy, so i know somewhat how you feel.
Problems didn't set in for me until i was around 16. When i suddenly couldn't even walk to the bathroom any more without becoming extremely out of breath.
I managed to have extensive testing done on my family (even had my blood researched by Oxford University) due to healthcare being free where i live, and it turns out that my defective gene is carried by the women on my mother's side, but can only effect men.
Meaning my mother and sister are both carriers who can pass it to their children but neither can actually be effected by the condition themselves.
And i, being a man am effected by it, but i can't pass it on.
Luckily they just legalised mitochondrial donation here in England, i believe it's the first place to do so. So now when my sister has a child she will be able to use this to eliminate any risks of it being born with the faulty gene. Which is extremely good news.
If you ever wanna talk about it or anything feel free to contact me.
I guess i have to add a question too since this is an AMA, so here goes:
Are there people who think you are just being lazy, or don't understand that you cant do certain things? seems to me id need have a literal wheelchair for people to understand.
Also have you ever suffered depression or anxiety?
SpaceBake14 karma
Hey OP, i suffer from mitochondrial cardiomyopathy, so i know somewhat how you feel.
Problems didn't set in for me until i was around 16. When i suddenly couldn't even walk to the bathroom any more without becoming extremely out of breath.
I managed to have extensive testing done on my family (even had my blood researched by Oxford University) due to healthcare being free where i live, and it turns out that my defective gene is carried by the women on my mother's side, but can only effect men.
Meaning my mother and sister are both carriers who can pass it to their children but neither can actually be effected by the condition themselves. And i, being a man am effected by it, but i can't pass it on.
Luckily they just legalised mitochondrial donation here in England, i believe it's the first place to do so. So now when my sister has a child she will be able to use this to eliminate any risks of it being born with the faulty gene. Which is extremely good news.
If you ever wanna talk about it or anything feel free to contact me.
I guess i have to add a question too since this is an AMA, so here goes:
Are there people who think you are just being lazy, or don't understand that you cant do certain things? seems to me id need have a literal wheelchair for people to understand.
Also have you ever suffered depression or anxiety?
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