Protein C and S deficiency-need info!

Published Feb 7, 2002

992 Posts

I am not a hematology/oncology nurse, but I thought I would post this here to see if anyone had some answers for me. My 29 year old sister suffers from Protein C and S deficiency. This disorder reared it's ugly head 9 years ago when she was pregnant with her first child. Since then, she has suffered numerous blood clots in her leg. These clots always affects the same leg and usually extends from her groin to her knee. She is on Coumadin and they are trying to maintain her INR betweeen 3.5 and 4.0. Even though she sees a hematologist in a city of 145,000 he is puzzled with her case. He is recommending that she sees a specialist at a teaching univerisity. She lives in Southwest Indiana, so she would like to find a specialist in Indianapolis, St. Louis, or possibly Nashville TN. Her doctor said something about Vanderbilt in Nashville. Anyone have any ideas/suggestions/resources that I can give to my sister? I have found some stuff on the Internet, but most of it is written in such techincal medical language that a doctor would even have trouble understanding! I would appreciate any replies from anyone with information on this disorder. You can leave a private message for me or email me: [email protected]

Thanks.