Shannon's Story
South Carolina, USA
September 19, 2009

I was diagnosed with Parry Romberg's Syndrome at age 29 - here is my story:

I was 25 years old when I had a strange sensation that something was in my eye. I couldn't see out of my right eye. I was getting ready for work and thought that I had slept funny or something. I have always had perfect vision - no glasses or contacts- so I went to work thinking that there was something in my eye that I just couldn't get out. Around lunchtime at work, I developed some pretty severe headaches and again brushed them off. I was working as a research scientist and thought that the headaches were just a product of microscope work or something to that effect. After telling my boss about these incidents, she suggested that I should maybe see an eye doctor. I called to make an appointment, again thinking that nothing big was going on. When I explained my symptoms, the opthamalogist wanted to see me right away. I should interlude that I had also been a fitness instructor during the day before and after my "real job," so I was very healthy and had had no medical issues. The opthamologist said that I was legally blind in my right eye and she wanted me to go to the hospital right away for some tests. I remember her saying that in a healthy 25 year old, this is usually a sign of Multiple Sclerosis or a brain tumor.

This was the start of my journey to discover that I had Parry Rombergs. Obviously, a lot happened between age 25 and age 29, including (but not limited to), multiple spinal taps, multiple doctors, MRI's, blood draws, scares for other diagnosis, worsening symptoms, drugs that made me incredibly ill, 3 intravitrial injections (that's a large needle directly into the eyeball - while awake!) and various other diagnostics that were exhausting and often painful.

At some point, I noticed a strange indentation on my forehead that I had not noticed before. When I brought this up to my neuro-opthamalogist (who, by the way is awesome- and another topic I could go on and on about - i.e. - bad doctors vs. good ones), we finally noticed that I had atrophy on the right side of my face. Now - I have to interlude here to say that I do not have atrophy as bad as most - which is mostly the reason it took so long to get a diagnosis. It appears that I have had mild atrophy since I was a child, but it wasn't until it went into my neurological issues, that we realized that I had a disease at all.

Now - here's the catalyst to me writing this:
This was a quick synopsis of what happened with me - I know, especially if you have this disease, you know that everything from the symptoms to the diagnosis are not nearly as easy as they sound in a paragraph. It was an excrutiating process - physically, mentally- everything. I look in the mirror every day and worry about my face, I have just enough neurological damage to make life pretty daunting, but not enough to put me in a wheelchair or anything similar. I say this because it has been a very very hard journey to try to make other people - even friends and family recognize just how hard this is. I think that most people are so visual in their beliefs - they don't see what goes on "behind the scenes." I am still legally blind in my right eye, I get terrible bouts of vertigo, I get horrible fatigue, horrendous headaches, dizziness, and hearing loss in my right ear. There are many other things I deal with, but as you all know, they can be very numerous - maybe too much to list in this story. My point is that I think one of the most difficult things is dealing with the symptoms, but looking mostly "normal." I have lost friends who didn't believe/care/understand - and I think that everyone with PRS knows the feeling of people not understanding - comes with the territory of having a rare disease. I will admit that having this disease can be difficult and isolating, however, this is not meant to be a pessimistic story.... now for the good stuff:

It is diseases/tragedies/events like these that test our strength, our will and even the company we keep. If it were not for this disease, I would have never found this wonderful group of people (Romberg's group) who have been the most beautiful, supportive, kind people in the world. It is diseases like this that let you know what is truly important in your life and WHO is truly important in your life. I am currently pursuing my PhD in exercise science/neuroscience, and though I will admit that life is not easy with this disease, I will also admit that it has made me a stronger and more compassionate person, and I am thankful for that.

When I wrote this (2009), I was 31 years old. I don't know if my PRS will get worse. It seems to vary from case to case. All I know is that I think that I have finally come to a point of acceptance and I am growing from there.

Shannon