As we look toward the future

In May of 2012, my father received a diagnosis that no one saw coming: Heavy Chain Amyloidosis. He had been sick for years, decades even. He had atherosclerotic plaques throughout his heart and carotid arteries and suffered GI symptoms that would cause severe bleeding and nausea. I remember my father being sick for most of my life, but despite his failing systems, he fought every minute to work hard to provide for his family and to spend more time with those he loved. 

Before he started chemotherapy, my dad had his kidney biopsy sample sent to Mayo Clinic. Our lives changed forever in July 2012 when we found out that my dad had an ultra-rare form of hereditary Amyloidosis called Fibrinogen A Alpha Chain Amyloidosis. Fifty-percent chance of passing the gene to his three daughters. Chemotherapy was not an option for treatment, and Dad was told he was not a candidate for an organ transplant. Instead, he would go through the years of his diagnosis doing supportive therapies. Peritoneal dialysis. Albumin infusions. Arthrectomies. Stents. Cardiac catheterizations. Hemodialysis. We balanced our lives with caregiving, considering our own future health, and trying to live normal lives–something my dad wanted for my mom, my sisters, and myself. We continued this cadence until my father passed away on November 26, 2018, of a heart attack. He was a huge presence in our family, and he continues to be dearly missed by so many.

My dad always denied that his disease was hereditary. The thought of passing down a rare genetic mutation was devastating for my dad, so he somehow managed to interpret his results in a way that made them “inconclusive.” We all dared not to argue with this, as we knew that believing the truth would devastate him to a point where he would not want to live. He ended up enjoying time with family and friends between dialysis and infusions. He and my mother would form close relationships with their treatment teams. They became family, and I credit them all for giving our dad six more years of life after being diagnosed with a disease that no one understood.

I would wait until 2021 to begin the process of genetic testing for the FGA gene, the gene that causes Fibrinogen A Alpha Chain Amyloidosis (AFib). July 2021, eleven years after my father found out he had the gene, I found out I tested positive for the mutation as well. Almost simultaneously, my aunt (my dad’s sister) had a transient ischemic attack and started going into kidney failure. She, too, tested positive for the FGA gene. I have since been evaluated at Boston Medical Center’s Amyloidosis Center, and I am healthy for now with no sign of the disease. 

As I look to the future for myself and my son, I see so many possibilities for improved treatment and cures for genetic diseases. I am encouraged by the research and drugs being produced for ATTR and gene therapy. My family and I are actively working on a fundraiser for the Amyloidosis Foundation for November 26, 2022, in memory of an incredible husband, father, brother, cousin, and friend: Glenn Dale Gallaway. We will continue to advocate, spread awareness, and support those who feel like they are not understood because of the rarity of their disease. Just because we are rare, does not mean that we are alone.

Please learn more about our family story on Instagram, Facebook, or Twitter @FibrinogenAF   

Written by:  Mandy Gallaway Lacey, daughter of Glenn Dale Gallaway (1948-2018)

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