What I Wish I’d Known About How Hereditary Amyloidosis Affects Families

One of my greatest accomplishments in life is being a mother to four amazing individuals. I cannot give enough credit to my kids for handling all of the challenges that come with having a father stricken with hereditary amyloidosis.

When my husband, Aubrey, was diagnosed in 2013, breaking the news to our young children — ages 11,12,14, and 16 at the time —about what this terminal disease would mean was painful to say the least. Looking back, and having since discovered how previous decisions affected them, I wish we could have done things differently.

It was not a mistake to tell them about Aubrey’s diagnosis, but we should have been more open to helping them handle their own emotions. My husband and I were so consumed by our own anguish that we failed to properly take into account what our kids were going through.

We should have been more willing to have conversations about the disease and what it meant. We thought we were protecting our kids, but in reality, we unknowingly burdened them with fear and stigma. In a sense, we unintentionally abandoned them and left them to handle things on their own, with no one to turn to for help. It is heartbreaking to acknowledge this fact.

Hereditary disease is distinct from other disorders because children can see firsthand the effects of an illness while simultaneously anticipating that one day down the road, they likely will relive similar experiences. It is gut-wrenching and terrifying.

As a mother to young adults now and a carer for a spouse with hereditary amyloidosis, there is nothing we can do to allay our fears of experiencing a reprise. We can only hope and pray that newer and more promising treatments will prevent our children from going through what my husband is experiencing.

As a teenager, Aubrey was the carer for both his grandmother and his father when they became stricken with amyloidosis. He was there until the very end, entrenched in the ordeal of their suffering until they passed. This type of exposure to such traumatic events scars a person for life.

Back in the 1980s, mental health was not at the forefront of discussions, and it was impossible for Aubrey to seek help in handling the ordeal. Instead, he was left alone to figure out his emotions, thoughts, and feelings. He was expected to “man up” and move on.

Fortunately, he managed to pick himself up and build a successful life, but those shadows never left. This is truer now that he has become a sufferer, too.

So, if you’re reading this and find my story familiar, I suggest the following:

• Don’t shy away from talking with your loved ones about what you are going through. Whether it’s with your children or other family members, confront the issue no matter how difficult and agonizing the experience may be. Because we didn’t do that, our young children had to experience psychological distress that went on to affect their behavior and their interactions with others. Laugh and cry together. You will see that the love you have for one another will become stronger.
• Learn coping strategies as caregivers, because this illness makes everyone in the family a carer. I am as much a carer as my kids are. By facing the challenges together, the load will become lighter, and relationships with one another grow stronger. Despite the difficulties we faced, we have since become more united as a family because of the disease. We are fortunate in that sense, because the situation could have been much worse.

“He who knows no hardships will know no hardihood. He who faces no calamity will need no courage. Mysterious though it is, the characteristics in human nature which we love best grow in a soil with a strong mixture of troubles.”— Harry Emerson Fosdick

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Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.