Thursday, October 2, 2014

Zebras and Ducks

rare disease  life's a polyp

Anyone with Familial Polyposis is already a rare individual. National Registries show FAP occurring in 2.29-3.2 per 100,000 individuals. And if you're anything like me, this rarity is only the beginning of rare health issues.

My GI doctor has for a long time, quite accurately told me that:
 "You look like a duck, act like a duck, sound like a duck. But actually, you're a zebra".
She couldn't be more correct. She tells me that there's no reason I should have the severity of stomach pains, bloating, severe malabsorption, and issues with rich foods that I do. She has stated for years that I would be a perfect case study for medical students because I'm not your textbook example of a FAP patient, what is typical is never typical with me. Everything is the opposite. Doctors check your abdomen for a quiet gut, they actually shouldn't be hearing constant gurgling. However, because I'm always the opposite, my doctor knows that if she doesn't hear steady gurgling from my abdomen, I'm in serious trouble.

It's not uncommon for health issues from FAP to lead to other problems. And it makes sense. With years of malnutrition, other parts of your body are at risk. My neurologist and my physical therapist don't know what caused my bulging disc but my malnutrition issues, past and present, definitely have further complicated my neck issues as discussed in my previous post. Since my last post, my physical therapist diagnosed me with an ALAR ligament sprain and told me this is a rare occurrence and his first in his 20 years of experience. Seriously!? Well, go figures. Why not, that makes a total combination of 4 different issues with my neck - disc, joint, muscle and ligament. I'm pretty sure that the only thing left is for a broken bone. Ha. My neck issues change rapidly, improving and worsening without warning. And due to the constant unpredictability, my physical therapist has joined my GI doctor on the zebra train and now refers to me as a lil' zebra. I can't help but laugh, it's only the truth.

Being a zebra in a world of ducks can be frustrating. You don't really fit in, medical providers don't really know what to do with you, you're more likely to undergo much more testing and procedures in efforts to rule out what normally would be the cause of symptoms, more treatment methods you have to sift through in a trial and error basis. In spite of all the frustration, there is a positive side that the ducks won't experience or contribute to the medical field.

When you are a zebra in a duck suit and you have good medical providers, they can be armed with this knowledge to look for the stripes instead of the feathers, to remain open minded to alternative answers and explanations and to consult more with others in their fields. Consultation is beneficial to all involved - increased understanding, awareness and opportunities for learning and different treatment approaches to complex health issues.
So embrace your zebra stripes. I've learned to wear my zebra stripes as another badge of honor. Nothing makes me smile quite as much as when a medical provider, like my physical therapist, declares "There is nothing normal about you".
Nope, there isn't. And that's what makes me so special, within and outside of my medical issues.


  1. Oh my gosh! I want to laugh and cry at the same time. No one gets all my problems. You stated this SO well. "It makes sense." I'm so glad someone else gets this, I feel so many who have FAP and remove their colon don't understand how it affects the WHOLE body. I could go on and on. Not only don't the medical professionals understand it - kind of why I'm on the natural path - but relatives don't either. I "look" fine, i'm not super skinny so I must "be" fine. UGGGHHHH!

  2. You're definitely not alone in the struggle. It takes a willingness to understand and to learn to grasp how extensive the effects of FAP is. It was years before I was able to connect the dots myself, and I'm one with it, living with it everyday. I always answer the question is it caused by FAP with a yes and no answer. Without the FAP, I wouldn't have xyz problem but it actually occurred as a side effect of the FAP. what a weird concept for nonies (ha, I'm gonna start referring to non-FAPers as that). There's so much going on in our bodies we won't find out about until the next thing happens, we're prime examples of an invisible illness. Maybe show your family a healthy looking doll that opens up with crazy junk inside, maybe they need a visual. :)