The story of Michelle
I’m 41 yrs old today. I was born with PKU a metabolic genetic disorder that keeps me from eating like the rest of the world. People with PKU cannot break down protein which in a normal body then turns into tyrosine which our bodies can’t create. This is A diagnosis that needs to be checked at the newborn screening right away because if like me you have it then we need to be put on a very special formula a strict diet right away. If not then with all the Phe ( phenylalanine ) build up will cause damaging lifetime unreversable impairments. Even with me having this I wanted some bad to be ” normal” when I was young. I always stood out not just because of my red hair, fare skin, and freckled face which was bad enough but I was the one who had to where the medical alert necklace and bring my own foods or have it specially made. I’ve learned over the years that being different is not a curse but rather a blessing because for everyone of us here battling some form of rareness we are ALL walking / breathing testimonies for others. Not only do we lift each other up in rare disease network but also every normal person who may not know or knows someone else with a rare disease. I do not let this disease define me. If anything its helped me. Ive served in the U.S. Army, was deployed in Operation Iraqi Freedom, worked in Civil Service, changed careers and now in Healthcare Industry. I and anyone else can accomplish anything with work and Faith. I am blessed to have been diagnosed early, blessed to have had a mother that loved and cared for me learning about this disease as she was raising me, to have PKU clinics and people working closely hand in hand with the patients and families. To always put on special camps, siminars, etc to constantly help educate. So, thank you to ALL who participate from researchers to patients and beyond. Much Love❤
From: #apkugirlinnc