Personal Stories: Marfan Syndrome Person (female)
My Daughter was diagnosed with Marfan Syndrome at the age of 10. She
is now 25 and has a dissection due to child birth. She was released
from Pediatric Cardiology at the age of 23. Doctors said that her
Aorta was normal and that she did not have Marfan syndrome. My
daughter was seen by many doctors from the age of 10 to 23 concerning
this condition. At the beginning I was told that she was not allowed
to play any organized sports, nor anything that would raise her heart
rate. I asked about child birth (even at the early age of 10), it was
recommended that she did not have children.
the years went on and he aorta checked yearly, the doctors finally
dismissed her at 23. Again, I asked about child birth and I was told
that my daughters aorta was fine that she could have 5 to 10 babies
normal. She became pregnant a year later. She told her baby doctor
that she was diagnosed with Marfan syndrome but not sure if she had
it, (because what we were told for the past 13 years).
paid no attention and treated her like a normal girl expecting. She
had her little boy on Aug. 30th, normal delivery and 2 days later her
aorta dissected from the top of the arch to the very end. Her aorta is
now 4.1 cm and still growing, at the time of her dissection it was 3.4
so in 20 months it has enlarged 2.9 cm. She is being closing watched
and now taking blood pressure medicine to keep her pressure down.
she is experiencing joint problems, swelling of her wrist, ankles,
fingers, and her knees. She has been to a specialist who is now
sending her to a rumatolgist and since she is now on disability, she
has no medical insurance (has to be disable for 2 yrs before she can
receive any medical coverage) that's another story. Our family doctor
has done some blood work and says that she has a high influmation
count, ostero arthritis and Lupus. I think this has something to do
with her dissection but her heart surgeon does not think so, any
thought on all of this? Please reply, and please ignore the
mis-spelling. Thanks for taking the time to read our story.
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