The worst day in my life
My beloved son Joey died in his sleep May 21, 2008 at the age of 22. He was not sick but did have Marfan Syndrome …
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I guess I should tell you a bit about myself.
I'm an 18 year old girl born and raised in New Zealand.
I was born with Marfan syndrome which I inherited from my mother, she was told that she had a one in two chance that any child she had would inherit it. She had two children and I ended up the one who inherited it. I was diagnosed at birth, aparently the doctors just looked at me and said that I had it. I had the long limbs at birth and well the spider fingers. When I was about 8 or 9 I had my first scan done along with my sister she was given the all clear and I was confirmed to have marfans on the finding that I had a mitral valve prolapse. Since then I have had several other problems occur due to it. I was involved in an accident where I was bold off my bike by a small truck and doctors in a&e were shocked to find that I had a collapsed lung dispite there being no sign of impact on my chest area.
I've not so much suffered health wise from this syndrome more mentally I guess. However i do get pulpatations and chest pain, shortness of breath and tiredness.
Other things:
I was diagnosed last year by a clinical psychologist as having an anxiety disorder which caused serious spells of depression as well as suicidal tendancies at times. It is believed that something traumatic happened when I was very young causing this disorder along with an eating disorder (I havent eaten fruit voluntarily since I was 2).
I have been through quite a bit of mental unwell from being bullied at school and not being comfortable about the way I look- of course I have the whole extremely skinny and tall thing from marfans syndrome as well as a sternem (chest bone thing) irregularity. When I was younger and still now occasionally I get people in public who will point at me and whisper comments and even though they whisper I know exactly what theyre saying. Or having complete strangers walk up to you and ask you if your anerexic or telling you to go eat something when they have no idea that it doesn't matter how much you eat you never put on weight.
People say I'm lucky cos I can get away with eating mc donalds and not put on weight but the truth is I'd rather be able to put on weight because I'm sick of people judging me by the way I look and making out that its my own fault that I am the way I am when they have no idea at all.
To be honest sometimes it puts me off having kids of my own because I know that theres a chance they'll inherit it and I don't want to put them through the mental pain that I've been through.
The only person I have with Marfan Syndrome is my mother and she doesn't have it as bad as me so doesn't understand what I go through because of it. It would be nice to meet someone else who is the same as me just because then I wouldn't feel so alone and well out casted from society.
I'm an 18 year old girl born and raised in New Zealand.
I was born with Marfan syndrome which I inherited from my mother, she was told that she had a one in two chance that any child she had would inherit it. She had two children and I ended up the one who inherited it. I was diagnosed at birth, aparently the doctors just looked at me and said that I had it. I had the long limbs at birth and well the spider fingers. When I was about 8 or 9 I had my first scan done along with my sister she was given the all clear and I was confirmed to have marfans on the finding that I had a mitral valve prolapse. Since then I have had several other problems occur due to it. I was involved in an accident where I was bold off my bike by a small truck and doctors in a&e were shocked to find that I had a collapsed lung dispite there being no sign of impact on my chest area.
I've not so much suffered health wise from this syndrome more mentally I guess. However i do get pulpatations and chest pain, shortness of breath and tiredness.
Other things:
I was diagnosed last year by a clinical psychologist as having an anxiety disorder which caused serious spells of depression as well as suicidal tendancies at times. It is believed that something traumatic happened when I was very young causing this disorder along with an eating disorder (I havent eaten fruit voluntarily since I was 2).
I have been through quite a bit of mental unwell from being bullied at school and not being comfortable about the way I look- of course I have the whole extremely skinny and tall thing from marfans syndrome as well as a sternem (chest bone thing) irregularity. When I was younger and still now occasionally I get people in public who will point at me and whisper comments and even though they whisper I know exactly what theyre saying. Or having complete strangers walk up to you and ask you if your anerexic or telling you to go eat something when they have no idea that it doesn't matter how much you eat you never put on weight.
People say I'm lucky cos I can get away with eating mc donalds and not put on weight but the truth is I'd rather be able to put on weight because I'm sick of people judging me by the way I look and making out that its my own fault that I am the way I am when they have no idea at all.
To be honest sometimes it puts me off having kids of my own because I know that theres a chance they'll inherit it and I don't want to put them through the mental pain that I've been through.
The only person I have with Marfan Syndrome is my mother and she doesn't have it as bad as me so doesn't understand what I go through because of it. It would be nice to meet someone else who is the same as me just because then I wouldn't feel so alone and well out casted from society.
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