Big Words

"The heterogeneity of the vitreous humor on T2 weighted MRI sequences is pathognomonic for sticklers syndrome which is a relatively common collagen disorder."

What does the sentence above mean?

A friend of mine is a radiologist, so I asked him to give me a sentence in what I refer to as "doctorese," which is my term for the language that doctor's use, that no one except those in the medical profession understand.

I asked him what that statement above meant. He wrote "Your face is flat due to an inherited disorder of your collagen fibers that make up all the soft tissues in your body."

So that seems basic enough, correct? No. I still don't know what this TELLS me. Is this bad? Is this something I need to worry about? Since it's inherited, does this mean my children will have this? Collagen is fat right? I have fiber in my body?

I asked him to break it down even further. He sent me the Wikipedia article for Stickler Syndrome. I told him I wanted his break down of the information. He then said, “Nothing is to be done with that. They usually have poor eye sight. That's really it. They may have mitral valve prolapse which may put them at increased risk for heart failure. They also tend to get arthritis."

Do you know what a mitral valve prolapse is? Do you understand heart failure? Arthritis? It seems one question is answered, with new information that I then don't understand.  

Health literacy is defined as "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions." (NNLM.gov, http://nnlm.gov/outreach/consumer/hlthlit.html)

This means reading, listening, understanding, and decision making.

A problem arises when people need to make decisions based on information given to them. How can they be expected to make good decisions, when the information is difficult or impossible to understand?  Regardless of your socio-economic background, health literacy affects everyone.

Doctors are full of knowledge, and have the skills to save lives. We as patients want to understand what they are doing to help us. There needs to be a communication bridge between the doctors and the patients, to make sure the best care is given and how it will happen is understood.

 Do you have experiences like this?