Is it easy to find a doctor that knows about Marfan Syndrome? This is the number one question I am asked when my family moves. The answer to this question is ,"No". When we were in the United States Marine Corps and moving is part of the job. We have lived on the east and west coast, but I find it a challenge to find a doctor in our current location of Charleston, SC. We have made this our home, since getting out in March of 2010.
I have found that in bigger cities I haven't had a problem finding a doctor. You really have to do your homework to know if the doctor knows about the disease, because I have caught many doctors that say they know and in the end they do not. I feel that some doctors need to be more truthful about this serious diseases such as this, because if he/she isn't, the patients life can be at risk. Here are some question that I ask doctors when I am in search of a new physician.
What type of questions to ask?
I have found that in bigger cities I haven't had a problem finding a doctor. You really have to do your homework to know if the doctor knows about the disease, because I have caught many doctors that say they know and in the end they do not. I feel that some doctors need to be more truthful about this serious diseases such as this, because if he/she isn't, the patients life can be at risk. Here are some question that I ask doctors when I am in search of a new physician.
What type of questions to ask?
- Do you know what Marfan Syndrome is?
- How long have you been in practice?
- How many Marfan patients have you had?
- Do you have any experience dealing with Marfan patients?
- Are there other doctors that you know that know a lot about the disease?
I actually caught an orthopedic doctor here in Charleston, SC making up some type of explanation for my scoliosis. The doctor came in and told me that it was due to the Marfan Syndrome and that it was a ligament issue. I responded to him by asking, " How can it be a ligament issue, the burning feeling I have is more like a muscle"? The doctor said in response to my question, " Then it must be a muscle issue, your shoulder blades are not level." I knew then that I caught him in a guessing game of the cause of my diagnosis.
Recommendations before moving to a knew town:
Recommendations before moving to a knew town:
- Do research on the city that you are moving to.
- Research the hospitals in the area.
- Ask your current doctors of recommendations on doctors in the area.
By doing this you will know exactly what is in stored for you health wise, and it will help you decide on if you really want to move to that town or city. I have had my share of research to do when we have had to move, and the number 1 thing for use is to live close to a hospital, because you just don't know what can happen to you. The last thing you want is to live a hour away from the nearest medical hospital. I try to not think of the worst thing that can happen, but it will ease your mind knowing there is help close by.
On the National Marfan Foundation website they valuable resources for you to keep on file. I use the Emergency Information Packet for myself and my daughter. We have had many doctors and keeping a record of current and past doctors helps a lot. The website also has a Hospital Interview Form, which has detailed question to ask your doctor.
I hope all of this helps.
On the National Marfan Foundation website they valuable resources for you to keep on file. I use the Emergency Information Packet for myself and my daughter. We have had many doctors and keeping a record of current and past doctors helps a lot. The website also has a Hospital Interview Form, which has detailed question to ask your doctor.
I hope all of this helps.
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