Von Hippel Lindau Syndrome - help please

[tequilamock]

My Father died of a heart attack at 53 (he had 2 heart attacks), his father died at 40 - after 4 heart attacks. My Aunt (my father's sister) has just been diagnosed with Von Hippel Lindau sydrome, and has been receiving chemo for cancer. This is a hereditary disease. I am waiting to be seen my genetics specialist, but I am worried... I also have a baby daughter.... Could anyone please tell me if the heart attacks could have been caused by this syndrome and my father and grandfather went undiagnosed. Also, if I am found to be positive, what it the prognosis for me, and, God fobid, my daughter, if she is also a carrier....

[sqad617]

Very rare inherited disorder about which I know very little.

Google it.

[tequilamock]

Thanks. I have googled it, but it is fairly inconclusive. Not rare if your parents have it...

[sqad617]

Well.....I am not a Geneticist, but your father and grandfathers heart attacks are ver unlikely to be due to VHLS.

You will have to wait untill you see the Geneticist and have tests, before your other questions can be answered.

[Mr Veritas]

This site:~
http://www.patient.co.uk/showdoc/40001296/
is very informative,if a little technical.

This page at Wikipedia is shorter on information,but easier to read/understand:~
http://en.wikipedia.org/wiki/Von_Hippel-Lindau _disease

and finally,this site is in the US but is aimed at families with
VHLS:~
http://www.vhl.org/

I hope some (or all) of these may prove helpful,it must be worrying for you.

[tequilamock]

Thanks VERY much Mr Veritas!