The story of Leah
I was born with two different colored legs – one was “normal” skin tone, the other, almost purple on 90% of the surface. The doctors called it a birthmark. As I grew older, the leg became more red than purple and the doctors became concerned about the size differences (3/4″ in length, varied girth anomalies) in the 2 limbs. I had growth-plate x-rays biannually until puberty.
On the personal side of things, kids are cruel. I was called “red leg” throughout my school years. My mother was (and is) my biggest cheerleader and she encouraged me to 1) ignore the mean kids, and 2) to try anything I wanted to. So, I danced, was a state-ranked gymnast, and cheered in spite of the physical challenges. So glad I did!
On to adulthood… a dermatologist called my condition Klippel- Trenauney-Weber Syndrome. No one had ever named my condition before. After extensive research and many doctors later, it’s been determined that I do not have KTW as I don’t have the lymphatic or varicosity issues. So, the next diagnosis: Defuse Capillary Malformation with Overgrowth. That has now been updated to Capillary Malformation-Arteriovenous Malformation Syndrome. It doesn’t matter what it’s called… my legs are still two different colors and two different sizes. That affects my low back now that I’m in my 60s. Yet, I push on and do Pilates regularly.
And if that isn’t enough, I was diagnosed with POTS several years ago. For me, that equates to bradycardia episodes (heart rate can drop to 40), vision issues, intestinal/motility challenges, and severe brain fog. Medications help with some issues, not with others. Thankfully, I have learned how to manage; it’s not always pretty or fun, but so be it. I have and always been a fighter!
My favorite line ever: You Are NOT Your Diagnosis!
Push ON!!!