Ryan's Story

Hello everyone, my name is Ryan and this is my story:

Well……, I don’t guess there is a right or wrong way to start this thing off, so I will just say it’s been a life changing experience as I would assume the same for everyone else effected. As I am wiping and rubbing my left eye as I type this, I try my best to look at life from a humble, positive, yet realistic point of view each day. I don’t believe there is a right or wrong way to deal with something like Parry Romberg’s, but yet, it’s a process of learning new ways to cope and manage different scenarios brought about by which only a facial defect could bring. Lots of times when I look in the mirror, I am saddened and sometimes angry at what I see. Sometimes I cry…. It’s weird, but I view my face as I do life…. Both are imperfect, and both have good and bad. It’s 50/50, and the choice is up to me which one I will focus on. Focus on the fact that at least I have some vision in both eyes and that there is still good loving caring people in the world. Or, only see the left bruised, suck in side of my face and listen to the negative news lines flashing across the TV that only bring me down and diminish me as a person. I try my best to keep everything in balance throughout my life, and Parry Romberg’s has been a thorn in my side for over half my life that tries to keep me stumbling.

Ok, I will tell you about my history with Parry Romberg’s starting when I was 15 years old. I came in one day from playing in the neighborhood and my mother recognized what she thought was dirt on my forehead above my left eye. I tried to wash it off, but of course it wasn’t coming clean. In the following weeks/months, we made a trip to my family doctor and then the dermatologist and neither knew for sure what was going on. We did scans and 1or 2 biopsies at the dermatologist and everything came back good. To my best recollection, it took around 2 years until I was diagnosed with Parry Romberg’s. It’s funny how it happened and probably similar to other’s in how they were finally diagnosed. At the dermatologist office, the doctor would have any of her other doctor’s come in and take a look just for experience and college students as well. I felt many times like a guinea pig, but it paid off one day. A college student came in and was observing when she said, wait just a minute, I will be right back. She brought a text book in and opened it where she had been studying in class about a rare disease called Parry Romberg’s. It seemed to make sense with what I was showing, and we made an appointment in Cincinnati with a rheumatologist named Murry Passo. He diagnosed me when I was 17 years old and that was a sad day for me. I guess I was relieved to know what it was finally, but didn’t like anything about Parry Romberg’s.

Parry Romberg’s has done its most damage to me in my left eye. It’s affected my vision, and caused dryness where my eye lid doesn’t fit against the eyeball like it should. My physical appearance has been just as challenging to adapt to, and to re instill that looks aren’t everything, not only in others, but mainly in you as well!! I hope someone has enjoyed my story and I didn’t carry on too long.

Thx for reading, and have a great day.

Feel free to leave a message for Ryan at rombergs@hotmail.com