What is it?

What is Stickler Syndrome?
I'm sure if you're taking the time to read this blog, you must be connected to Stickler Syndrome in some way, shape, or form. Maybe you have been diagnosed with it or maybe a loved one of yours has recently been diagnosed or has been living with this syndrome for many years, and if any of these are the case I'm sure you're looking for answers.  Or, you could end up being like most people I know and have never even heard of this syndrome and now are very interested in further investigating the medical mystery that is "Stickler Syndrome". 

I'm not here to give you all the answers you're looking for, I'm definitely not a medical professional, a professional patient maybe, but that's the furthest my career in the medical field goes. I am just a woman looking to help other understand this syndrome and maybe find my own answers to my questions in the process.

I know that since I've been diagnosed with this syndrome I just have developed more and more questions in the years since my diagnosis; only ever so often do I sometimes find some sort of answers to all my burning questions, but that only happens typically by some strange chance of luck. You'll understand this a whole lot better once I dive into the big details of my life and living with Stickler Syndrome.

So… Lets answer one of those burning questions you probably have, "What is Stickler Syndrome?". 

Well, by medical definition, Stickler Syndrome is referred to as a group of genetic disorders affecting connective tissue, specifically collagen.This syndrome is characterized by distinctive facial abnormalities, ocular problems, hearing loss, and joint problems. 

I have actually come up with my own unique definition for this particular syndrome. I much rather prefer to refer to it as a dramatic inconvenience to life. Actually, I sometimes like to call it both a blessing and a curse but that really depends on the day. But, I'll get to that in another post. :)