Story about Stickler syndrome , Stickler syndrome.

Finally.....an answer!

Feb 15, 2016

By: Cassondra


I was born in 1965.  I was approximately three years out when it was determined I had neurosensory hearing loss in both ears.  I had speech therapy in elementary school, as I could not correctly pronunciate any words with an "R".  I had braces in high school, after the removal of eight teeth, including the surgical removal of my wisdom teeth.  My teeth are much straighter now, but still crowded.  My vision was perfect until age 19, when I began to wear glasses for driving (20/30).  I also have always had an abnormal amount of floaters.  Approximately 10 years ago, I began to present with achy joints - thumbs, hips, and knees.  Actually, any time I've ever attempted running, my knees have become very painful, so I never joined in that craze.  I think my internist didn't really believe me until....

March 2, 2014 - I notice a bright line of light in my right eye.  I saw my eye doctor the following afternoon, but I knew what was wrong before he saw me, as I could see blood dropping and swirling in my eye.  I saw a retinal specialist the next day, and my tear was fixed first with lasering, then two days later with cryo.  Over the next six months, I had four more tears along with four detachments.  Two detachments presented at the same time, and joined together within 24 hours before surgery to become a giant detachment - needless to say the surgeon was shocked!  At this point, one of the retinal specialist suggested that I might have Stickler's.  Genetic testing confirmed the diagnosis.

It is nice to know that my conditions are genetic - that there's nothing I've done to cause anything to happen.  I am legally blind in my right eye now, but my left is still 20/30.  I have lost quite a large amount of peripheral vision as well.  Some days it is hard to get out of the bed and get going, but once I do, it's hard to stop me!  I am so thankful for all of my doctors and staff, friends, and family who are all very supportive.

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


What is Stickler syndrome

What is Stickler syndrome

Stickler syndrome cure

Does Stickler syndrome have a cure?

Stickler syndrome treatments

What are the best treatments for Stickler syndrome?

Stickler syndrome causes

Which are the causes of Stickler syndrome?

Stickler syndrome symptoms

Which are the symptoms of Stickler syndrome?

Living with Stickler syndrome

Living with Stickler syndrome. How to live with Stickler syndrome?

Stickler syndrome is also known as...

Stickler syndrome synonyms

Stickler syndrome and depression

Stickler syndrome and depression