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I was adopted at birth and for many years have been curious about my family medical history. A few years ago (thanks to a chance DNA test) I learned I have a rare and potentially deadly genetic liver-lung disease called Alpha-1 Antitrypsin Deficiency. This basically means my liver doesn't produce a protein enzyme that my body needs to protect my lungs, and can lead to emphysema or COPD in someone like me who has never smoked. Any infection I get can lead to irreversible lung damage. If left untreated, it can lead to needing a bilateral lung transplant or death.
Due to the highly genetic nature of this rare condition and the frightening side effects if undiagnosed, the doctors encouraged me to find my biological family to encourage them to be tested as well.
"The 50-Year Secret" is my life saving journey to find them
Reviewed by Lit Amri for Readers' Favorite
"Alpha what? ZZ? AAT? Big words and acronyms that I didn’t recognize. All I understood about the alpha-1 was that it was a genetic liver disease, there was a vague increased risk of both liver disease and lung diseases like emphysema or COPD, and that smoking increased my risk." As an adopted child, six-foot-four Julie MacNeil often wondered about her birth parents. Her childhood years were challenging due to her height and her adult life ended with two divorces. Yet she pulled through and achieved success in her business. When a chance DNA test revealed an inherited condition called alpha-1 antitrypsin deficiency that raises a person's risk for lung and liver disease, Julie was determined to find her birth family to warn them about it as it often goes undiagnosed. The 50-Year Secret is the story of her remarkable journey.
“Tall women are beautiful. She’s just fine the way she is.” A wise doctor said these words to Julie's adopted mom, and his words brought a smile to my face and no doubt boosted Julie's confidence, who was 16 at the time. The writing is uninhibited, making her story an easily immersive read. Julie had been through a lot in school so it was a thrill to read of her newfound confidence when she found true friends and even 'kissing plenty of frogs'. Yet life kept throwing her curveballs; her troubled marriages, losing a baby, death of a parent, AATD－there were times I felt that the world didn't give her a much-needed break. Nevertheless, her grit and optimism are unstoppable. The 50-Year Secret is heart-rending but also uplifting and informative; an illuminating true-life story about rising above life's challenges, be it 'standing out' in the crowd or facing a life-threatening disease.
