Marguerite53
Premium Level User
Prompted by a thread from a new member, KarenAM, I decided to call 2 university hospitals and ask about research being done on aortic valves. Both of these particular hospitals are at universities which my children attend. Both have studies going on which would enable my sons to get free echocardiograms.
I am writing to encourage all those who have concerns about passing along their valve condition, or who want to know if their children are affected, to go into the website of the teaching/university hospital nearest you and look through the lists of research studies being conducted and just start calling the numbers until you find out if any study suits your situation.
What I encountered when I started calling both of these universities, was incredible graciousness, attentive interest and near immediate response from research professors and doctors themselves!! I had no idea that they would be returning my calls personally. I have had the most amazing conversations!!
Sometimes, the studies may be somewhat involved and require several days of commitment. For some studies there may be monetary compensation.
Another suggestion gleaned from one phone call was to check to see if there is any cardiovascular genetics counselling available at your hospital. There, too, might lie more favorable responses to queries regarding heritability. One cardiologist proclaimed that there is a 1 in 8 chance of the defect being inherited. At the other university, this was not a fact which was recognized. Someday, there will be definite answers. Maybe we can help find them!!
So many of us are concerned about our children and have met up with roadblocks from practicing physicians. Perhaps it is the research physicians who will be most responsive.
Good luck to all still searching for answers!
Marguerite
I am writing to encourage all those who have concerns about passing along their valve condition, or who want to know if their children are affected, to go into the website of the teaching/university hospital nearest you and look through the lists of research studies being conducted and just start calling the numbers until you find out if any study suits your situation.
What I encountered when I started calling both of these universities, was incredible graciousness, attentive interest and near immediate response from research professors and doctors themselves!! I had no idea that they would be returning my calls personally. I have had the most amazing conversations!!
Sometimes, the studies may be somewhat involved and require several days of commitment. For some studies there may be monetary compensation.
Another suggestion gleaned from one phone call was to check to see if there is any cardiovascular genetics counselling available at your hospital. There, too, might lie more favorable responses to queries regarding heritability. One cardiologist proclaimed that there is a 1 in 8 chance of the defect being inherited. At the other university, this was not a fact which was recognized. Someday, there will be definite answers. Maybe we can help find them!!
So many of us are concerned about our children and have met up with roadblocks from practicing physicians. Perhaps it is the research physicians who will be most responsive.
Good luck to all still searching for answers!
Marguerite
