Misty White

Tempe, Arizona, USA

Misty passed away on May 14th, 2016.

Her energy, determination, and happiness will be forever celebrated and missed. If you would like to support LAM research and awareness, visit www.thelamfoundation.org.

Last November I had to have two heart valves replaced, and I had a stroke to the right side of my brain effecting the left side of my body from a blood clot due to my blood thinner dose being too low. I just about lost all coordination in my left hand, but spinning poi has gotten my arm motion and finger coordination back in check. I can open and close my hand again, and move my arm all the way around in circles (when it wants to listen to my brain!). The doctor/surgeon said I would never be able to spin poi again after they cut my sternum open for heart surgery but they were wrong. I started spinning as soon as my chest didn’t hurt any more in the nursing home physical therapy room. The physical therapist there saw my progress and let the elderly spin bean bags as well if they wanted to try what I was doing. It greatly improved their progress because they were having fun. Some even came to my room outside of p.t. time to get lessons.

I also have a terminal disease called TSC-LAM for short. My lungs, kidneys, and brain are being invaded by blood cells that turn into smooth muscle cells; they pile up and cause benign cystic growths- tumors. The ones in my lungs pop releasing air into the body cavity collapsing my lungs (this has happened four times in 8 months). The brain tumors grow and cause blurry vision, migraines, disorientation, and loss of coordination. The ones on my kidneys pop and don’t do much damage but because I’m on blood thinner for my heart valves, I have had internal bleeding from them 3 times since December.

I went to Lamposium (the conference about my rare disease) to learn more because none of the specialists in Arizona had ever even heard of my condition. They had a gala to wrap up the weekend and let the patients meet the doctors, investors, etc. I ended up bringing my glow poi with me to the conference and I spun at the gala on the dance floor with a whole room full of people who had never seen poi before watching.

Dr McCormick came up to me with an oxygen sensor a few minutes later to put on my finger because earlier that day I had failed my pulmonary function test (they made me walk for 6 minutes to see if my oxygen levels would drop just walking around, and it did make my oxygen levels drop to an extremely low unsafe level which means I require extra oxygen for exercise now). But when I was spinning poi my levels stayed pretty normal, above 85, because of the way poi makes you keep your breathing in check.

I was the 687th person in history to be diagnosed with TSC-LAM. I’m very sick, but I’ve been spinning poi for almost 10 years and couldn’t give it up for the doctors. It’s definitely helped to keep me off of supplemental oxygen longer than the doctors expected (quote from dr McCormick lead lam/ pulmonary specialist in the United States @ NIH HOSPITAL).