Uncovering the 50-Year Secret

Learning she had the rare genetic disease Alpha 1 led Julie MacNeil to find her birth family.

Story
50 Year Secret book cover

Adopted as an infant, Julie MacNeil always wondered about her biological family. Reaching 6-foot-4 as a young adult – much taller than the rest of her family – she assumed her height was genetic, but she didn’t know any more. As she approached 50, she wanted to learn more about her family medical history in order to make smart decisions for a healthy future. When she watched a TV news segment on over-the-counter genetic testing, she saw an opportunity to get some answers.

“I had no idea what to look for,” said MacNeil. “So, when I found out I could spit in a cup and learn what genetic diseases or traits I may have, I jumped at the chance.”

She didn’t know it would lead to a journey of healing and reconnection so profound, she would write a book about it. MacNeil shared her story in her book, “The 50-Year Secret,” which recently won the Next Generation Indie Book Award for inspirational nonfiction.

The genetic results told her she had one of the breast cancer genes, a marker for Alzheimer’s and the gene for alpha-1 antitrypsin deficiency. Having never heard of Alpha-1, she read about the disease and its symptoms online. It occurs when the body can’t produce a protein in the blood called Alpha 1 antitrypsin, or AAT.

This protein plays an important role in protecting your lungs from damage due to excessive inflammation. Without this protein present in your blood, a person’s lungs may weaken over time and cause a higher risk for developing serious diseases, such as emphysema and chronic obstructive pulmonary disease (COPD). An abnormal amount of AAT in the liver can also cause liver disease.

A blood test can confirm a diagnosis of Alpha 1. The Alpha-1 Foundation provides a guide to testing options.

“I knew I had exercise-induced asthma, but I didn’t have liver or lung disease, so I made a mental note to talk to a doctor if my lungs ever got worse,” said MacNeil. By chance she met someone who had Alpha 1, who prompted her to be proactive. MacNeil credits that fellow patient for urging her to see a pulmonologist to check her AAT blood levels. She found out she was severely deficient and had grade 1 emphysema.

Serendipity Led to Action

MacNeil said she was scared at first, but then felt encouraged after attending an Alpha 1 education weekend.

“I was a little overwhelmed, but I’m a take-charge, move forward and get-things-done kind of person, so I just went to work learning all I could about improving my health,” she said.

MacNeil will need to treat this condition for the rest of her life to help keep her lungs from deteriorating. She also has to be more vigilant about avoiding illness. Any inflammation or infection can increase damage to her lungs.                                                                                                                                

Finding Family and Purpose

When she started treatment, MacNeil’s doctors urged her to try to find her biological family. They explained that Alpha 1 often goes undiagnosed until there’s major lung and/or liver damage, and said it was likely her relatives wouldn’t know they had it.

“I spent over a year fighting the Utah court system to open my adoption records,” said MacNeil. “What ensued was a lifesaving journey for several family members. My birth family has been very welcoming and open to learning everything about the disease. They are grateful I connected with them and helped to save several of their lives.”

In 2016, MacNeil spoke about her experiences at an Alpha 1 conference.

Julie MacNeil author

“So many people came up to me afterward and said I should write a book to help others learn about this disease and the importance of taking care of your health,” she said. “I decided it was a good idea.”

At many points of her journey, MacNeil said things didn’t go the way she thought they should. 

“I would get upset, a little discouraged,” she admitted. “But after writing the book, I realized that serendipity plays a huge role in my life. Looking back over all the events that took place, I came to the realization that if people, myself especially, could shift their perspective when things seem to be going wrong, if they could look for the positive, life would be a little easier. A little happier. A little less stressful. That’s what I hope people will get out of my story.”

“The 50-Year Secret” is also currently a finalist in the 16th Annual Best Book Awards for narrative nonfiction and MacNeil placed in the 2019 Royal Dragonfly Book Awards as a new author of nonfiction. She feels especially proud of the honors the book has won, especially because she struggled in school with writing, spelling and shyness.

“I really want to inspire people to keep going and show up for life when things get tough, as well as to be proactive about taking care of themselves and their heath,” said MacNeil. “My advice is to find the good in your situation, get your family involved and share your story to help others.”