Getting Medical Care with a Rare disease.

Having a very rare disease like Carpenter Syndrome, I have had a lot of challenges when it comes to treating my condition.  I have been told many times by doctors that they don’t know how to treat my condition and that I need to see another doctor.  My disease requires regular visits with orthopedic doctors and I have had a harder time getting treatment from these types of doctors in my adult years.  I know getting medical care is a challenge for the rare disease community, so I wanted to share what I have found helpful when it comes to finding the right doctor.

The doctors who I have found to be the best are the ones who take the time to listen me and do everything they can to learn more about Carpenter Syndrome.  These doctors are also usually the ones who treat the body from a whole body approach and not just one area of the body.  My advice to those who are in search of a doctor to treat their condition, is to not give up and to keep looking until you find the right one.  

I know it can be very frustrating when you feel like you are never going to find the right doctor, but eventually you will find the one that is right for you. I went to many different orthopedic centers and doctors and was at the point were I just wanted to give up. I eventually found an orthopedic center that was the right one for me.  Also sometimes asking others for recommendations can help as I found my primary care doctor through someone giving a recommendation on a neighborhood page.  My primary care doctor has been the best PC doctor that I have had as an adult as he listens to me and has a pretty good understanding of my disease.

If you feel like a doctor is not listening to you or does not have your best interest in mind don’t hesitate to look for a different doctor.  Having a rare disease means that we have to advocate for ourselves and usually give doctors lots of information about our disease.

If anyone is looking for orthopedic care in the St. Louis area I would highly recommend BJC orthopedic center and the living well center.  I have received very good care for my orthopedic and other needs from both of these centers.  Until next time Laura.