Hi,

I am new to this group. Might be good to chat with other young people
that have a congentital heart condition.

I am 25 years old I have a congenital heart condition, I have 2 holes
in the top and bottom of my heart. I have had a stent fitted 6 years
ago.

I was also born with VFCS Velo-Facial-Cardio Syndrome, I have had
both my knee caps operated on, I have scoliocis (curving of the Spin)
I had a an 8inch rod in my back in 89 nothing needs doing to that. I
was also born with a cleft palate which means I am a bit fussy with
eating certain foods, but getting better not much they can do to
repair it.

At the moment I am looking into the possibilites of a heart operation
which we feel I don't need at this time as quality of life is fine at
the moment. This would involve 3 major separate operations, I am
going to be having a test done on the pressure of the blood that goes
through the hole and see if the number is to low then they might
might try and close the holes at some point, otherwise there isn't
much that can be done at the moment.

With my condition sometimes find it difficult to breathe and get
tired and out of breathe when walking to far cold weather can be bad
on my knees and back.

A couple of years ago I meet one of the founders of VFCS Mr Spritzen
(American) he was quite interested in my case as I had mostly
physical difficulties and a lot of the condition with this syndrome
is to do with the face deformaties. If people are interested please
cheak out 22q11.com goes into more detailed.

I just thought that other people might like to know about my
experience. I would be happy to corresponde with anyone not to good
on all the technical stuff.
From
Lisa