A while back i mentioned that my GP had noticed my eldest daughters height gain and mentioned Marfan's Syndrome.
Yesterday we attended the Orthopaedic Surgeon and he checked her out and confirmed she has a severe hyperlaxity. It is now a case of someone with the hypermobility, the two signs she can do with her hand/wrist means it's 90% certain she has the condition.
Apparently the aortic valve can enlarge and can be fatal but with them knowing about it she will be monitored. We are currently waiting for a 3rd opinion from a Cardiologist as to whether she does have Long QT Syndrome where her heart can just stop. Such a horrible time for her and she is still being positive and bright about it and doing her mocks for her Junior cert. I would be a wreck!
I HOPE she doesn't have long QT as one bad heart condition is enough
Yesterday we attended the Orthopaedic Surgeon and he checked her out and confirmed she has a severe hyperlaxity. It is now a case of someone with the hypermobility, the two signs she can do with her hand/wrist means it's 90% certain she has the condition.
Apparently the aortic valve can enlarge and can be fatal but with them knowing about it she will be monitored. We are currently waiting for a 3rd opinion from a Cardiologist as to whether she does have Long QT Syndrome where her heart can just stop. Such a horrible time for her and she is still being positive and bright about it and doing her mocks for her Junior cert. I would be a wreck!
I HOPE she doesn't have long QT as one bad heart condition is enough
Comment