Living with a rare disease like Abetalipoproteinemia (ABL) is a unique journey, filled with challenges and triumphs. Today, we share the story of Megan, a brave individual who has navigated life with ABL since her diagnosis at 10 months old.
Megan’s Early Years
Megan’s journey with ABL began when she was just 10 months old. She was failing to thrive, with symptoms such as projectile vomiting, lack of weight gain, and a protruding belly. After several hospital visits and misdiagnoses, a new pediatrician referred her to a specialist at UNC Chapel Hill Hospital. Following an intestinal biopsy, Megan was diagnosed with ABL.
Dealing with ABL
Throughout her childhood, Megan faced numerous health scares and hospital stays. At five, she suffered a severe nosebleed leading to projectile vomiting of blood, requiring a Vit K injection and a week-long hospital stay. She started experiencing night blindness at seven and was referred to the National Institutes of Health for extensive testing.
Living with ABL
Megan’s daily life involves a strict vitamin regimen to manage her ABL symptoms. She has learned what foods she can tolerate and which ones to avoid. Despite her challenges, Megan maintains a positive outlook, pushing forward every day.
One of the biggest challenges Megan faces is the lack of recognition and understanding of ABL. Many doctors in her area are unfamiliar with the disease, making it difficult to find the right care. Further, the cost of essential vitamins is high, and insurance companies often do not cover these necessities.
The Struggle for Recognition and Support
Megan Today
Now 31, Megan has not let ABL define her. She completed vet tech school out of her love for animals and works at a vet teaching hospital. She has four dogs, her “pride and joy,” and strives to live a normal life, appreciating every day.
“Some days are harder than others, but I don’t dwell on it. I stay positive and try to enjoy each and every day.”
Join Our Fight
Stories like Megan’s highlight the urgent need for more research and awareness about ABL. You can join us in this fight. Sign up for our newsletter in the sidebar to stay informed and learn how you can help.
Your support can make a difference in the lives of individuals like Megan living with ABL.
