April is CDH Congenital Diaphragmatic Awareness Month. The International Day of Congenital Diaphragmatic Hernia Awareness is April 19th. Pulmonary hypertension patient, Morgan Nuchols is a passionate advocate for both #phaware-ness as well as for Congenital Diaphragmatic Hernia.
My name is Morgan Nuchols. I was born in Torrance, California.
I was born with a severe left diaphragmatic hernia, meaning that the diaphragm was not fully formed. It made organs go up into the lung space, which made the lungs not grow normally. At age 8, I was diagnosed with PH, in 2002, from my birth defect, plus left lung hypoxia.
April is CDH Congenital Diaphragmatic Awareness Month.
Every CDH baby gets PH. Many outgrow it. Many also pass from the two, or they could grow up with both like I did. I live a normal live, was the only girl in town with a tubing, but that was it. Everyone treated me nicely, and took care of me, and watched over me. While at school, I've been a special ed student a year behind my own age. Always had a one-on-one aide until 10th grade.
I found the PH community in 2015. Many of them, if they're long-term survivors, too, or newly diagnosed patients. This year, around my 23rd birthday, I found CHERUBS (congenital diaphragmatic hernia research, awareness and support) on Facebook and am helping them out.
I go to support groups because I could tell my long story, growing up with both CDH and PH. I took my mom with me to the lunch meeting, our first lunch meeting. I continued to go with dad or by myself. Just to learn more and help others find a cure for it, and explain every detail that I have learned about it. Not just my way, but other ways.
I enjoy doing social media stuff since I was 12. I have found a lot, and some found me, later on. Now, I found more congenital diaphragmatic hernia pages and patients. I'm just learning more from what others get from it, just meeting more that have it around the world.
I'm Morgan Nuchols, and I'm aware that I'm rare.
Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware