We can keep giving to others, even after an amyloidosis diagnosis
There is still ground ahead, so let's plant something good
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When a family receives a diagnosis like hereditary ATTR amyloidosis, time seems to change. The future, which once felt certain, suddenly becomes unclear. Plans start to depend on appointments, energy, pain, and the chance that tomorrow could be very different from today.
When my late husband, Aubrey, was diagnosed in 2013, everything changed for us. For nine years, I saw this disease affect how he moved, ate, slept, worked, and joined in family life. Even so, he kept giving to the people he loved.
That means a lot to me now.
A diagnosis can change how we see life, but it does not take away all hope. We can still share kindness, wisdom, encouragement, memories, forgiveness, and our time. We may not decide how long we have, but we can choose what we give while we are here.
Giving does not mean pretending everything is fine. Hereditary ATTR amyloidosis can cause constant pain, weakness, tiredness, stomach problems, and sadness due to lost abilities. Some days, just getting out of bed, eating a little, or replying to a message can take a lot of effort. Hope should not become another weight for someone who is already struggling.
Instead, hope can be simple and practical. It might mean telling your children the stories you want them to remember. It could be thanking the partner who goes with you to appointments, calling the friend who keeps checking in, or letting someone help you even if you value your independence. It can also mean sharing what you have learned with another family who is just starting this journey so that they feel less alone.
The people closest to us also live with the diagnosis. Partners might hide their fear to be strong. Children, even grown ones, may struggle to talk about what they see. Friends might pull away, not because they don’t care, but because they are unsure about what to say. Caring for these relationships means making space for honest talks. We can say, “I am frightened.” We can also say, “You matter to me” and “Let’s make today count.”
Love is never wasted
Aubrey and I were together for 26 years and raised four children. Amyloidosis took a lot from him and us, but it couldn’t take away the love we shared. After he died in 2022, people sent messages remembering his intelligence, humor, faith, and how he made them feel valued. These messages showed me that what we give to others can keep growing even after we are gone.
The Czech playwright-turned-president Václav Havel wrote that hope “is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out.”
That is the kind of hope I understand. It doesn’t promise a cure or ignore the reality of the illness. It is choosing to keep loving people. It is choosing to make memories, support better treatments, and encourage those who come after us.
In my work with the New Zealand Amyloidosis Patients Association, I have seen how sharing experiences can help others. One patient’s question might encourage someone else to seek help. A caregiver’s honesty can free another person from guilt. A family’s story can help push for fair access to treatment. We rarely know how far our actions will reach.
We keep giving because our lives still matter, our presence still affects others, and the love we share today is never wasted.
ATTR amyloidosis may change the future we hoped for. But as long as we are here, there is still ground ahead. Let us plant something good. Someone we care about may one day find comfort in what we have left behind.
Note: Amyloidosis 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 Amyloidosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
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