Saturday, March 21, 2009

The Day Our Lives Changed...

Five months ago our 7 year old son, Hank, was diagnosed with Parry Romberg Syndrome. Also known as Romberg's or PRS. It was devasting to hear that our son had a progressive and incurable disease that was starting to waste away his face, but it was also a relief to know what was wrong.
For two years, the left side of Hank's face had discoloration. It started as a rash, and we ran to a doctor who told us that it was an allergy. Then Hank's kindergarten teacher asked if
Hank had fallen or ran into something because his face looked bruised. So again, we ran to the doctor, who sent us to the dermatologist. The dermatologist said it was "atopic dermatitis" and handed us some cream. No change. And so another year went by and we continued to go from doctor to doctor. When he started to have mocha-colored streaks down the side of his face, we took him to our naturopathic doctor, 350 miles away. He felt like Hank had an infection of some sort that was affecting his thyroid and his immune system.
So 2 months later, when the diagnosis came through, we couldn't believe it. THAT was what was causing the discoloration? An incurable disease WASTING our child's face away? Not a rash? Not an allergy? Not atopic dermatitis? What the hell? Now what?
And so we started...started searching the Internet for more information. But not just Jeff and I, but my sisters and my mom too. And what did we learn? There isn't much information out there. PRS is so rare that there are only approximately 700 documented cases worldwide. There are probably more cases, but still it's like a 1 in 750,000 chance of having this. Oh sure, can't win the lottery...! It's like we won the reverse-lottery!

*update...someone pointed out to me recently that the odds are much greater than what I thought. If you consider the world population and let's just say there are 1,000 cases of PRS...that's still a one in 6,000,000 chance! in 6 MILLION! (What the hell?!)

1 comment:

  1. Terri, I am so glad you started a blog, it will be nice to keep up on what is going on - I am anxious to hear how your trip went. Hugs to you and the little guy - we understand what your going through.