Wife and daughter just diagnosed

Back to Ehlers Danlos Syndrome

    Topic: Wife and daughter just diagnosed

    Displaying all 4 posts by 4 people.
    Post #1
    Mark wroteon August 30, 2009 at 12:52pm
    My wife and daughter were just diagnosed with EDS, the vascular type, I was told that my wife is a walking time bomb. My daughter is 24 and My wife is 47 years old. I am trying to research but tear up fearing the worst. How can I help them through the pain, etc..... Thankyou
    Post deleted on August 30, 2009 at 6:24pm
    Post #3
    Ehlers wroteon August 30, 2009 at 8:22pm
    What helped for us is getting as much info about the condition - testing and things to monitor for. The EDNF is one place to get the info. They have a section on Type 4 EDS. Dr Howard Levy wrote a basic overview of EDS which includes yearly testing....

    http://www.endf.org
    http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=eds3 (Type 3 but has some general suggestions
    http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=eds4 (Type 4)
    Post #4
    Katharine wroteon August 30, 2009 at 10:06pm
    Dr. Levy is an amazing doctor (he's my genetic doc) Hard to get an appointment though, but if you can try and go see him at Johns Hopkins as he is truely one of the best when it comes to EDS.