h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

I have a missing protien in my system that has caused many problems with clotting: pulmonary embolism, pulmonary hypertension, leg ulceration, pain and strokes.
There are several variants, like protien C deficiency. All share one feature: the normal process of making and dissolving clots is disrupted at a given step in the process. In my case, clots form as they naturally do but the missing protien keeps them from being dissolved. So they build up till they stop the flow in a major deep vien system.
Here is a message board that discusses various aspects of the disease:
http://www.protein.org.uk/cgi-bin/ikonboard/ikonboard.cgi
. I have searched far and wide, there is very little research going into this illness (its rarity makes it unprofitable to cure). Please add any resource you may find during research projects.

Thanks! I'll add your link to the article when I get round to it, hope it raises awareness a bit!

Hi

As there's so little about protein S deficiency out there I thought I'd write a message sharing what I know about it.

I'm 32 and I found out about 5 months ago that I have PSD. I inherited it through my father, he has had blood clots on his lungs as a result of PSD but is now doing fine on Warfarin. His father probably had it too (he had a history of pulmonary embolism and circulation problems) as did his sister, although it was undetected in both of them as I understand it's only very recently been discovered.

I have known since I was 20 that I would have to have IVF to become pregnant and was really worried about the effect of PSD on this treatment. I have been told by my haematologist that PSD often causes miscarriages and so I will need to have daily anti-coagulant injections from just before I start treatment until (if successful) a few months after giving birth to counteract this. I'm currently on a waiting list for IVF and hope to start later this year.

As far as I am aware PSD is not anything serious as long as those who have it have been diagnosed and are being sensible - things I've been told to be careful about are the obvious like smoking, excessive weight, aeroplane flights over 4 hours and long periods of immobility, such as recovering from an operation.

I hope that this helps anyone reading to understand things a bit better. It would be great to hear from anyone else who has the condition or knows about it - especially the pregnancy / IVF side of it!

Best wishes

Emmah