Disease Awareness Can Lead to Better Outcomes
In 2018, Gov. Bill Haslam made Tennessee the first U.S. state to declare March as Amyloidosis Awareness Month. Since then, those diagnosed with the disease worldwide are acknowledged, recognized, and appreciated this month for the untold challenges they face with this condition.
Setting aside a particular month to address the issue of underrecognized illness is crucial for awareness, as patients and family members can highlight the condition in conversation. Hereditary ATTR amyloidosis exists in almost every country across the world. Unfortunately, many people are misdiagnosed due to the intricacies of its symptoms, which can mask as other illnesses.
My husband, Aubrey, carries this genetic disease. Before confirming his illness, he spent a few years feeling unwell and undergoing tests. Had his doctors been aware of amyloidosis from the beginning, perhaps his outcome would be better. But then again, when he was diagnosed in 2013, there was no viable remedy. At least not in New Zealand, where we live.
The only option for him was a liver transplant, which he finally received in 2016 thanks to his clinician’s tenacity. He almost didn’t get the transplant because he didn’t meet the criteria of having either liver cancer or liver cirrhosis. His Model for End-Stage Liver Disease (MELD) score was low, bumping him off the recipient list. The three-year wait resulted in irreversible and irreparable damage.
Fast-forward to today, and Aubrey’s health has deteriorated considerably. He now experiences heart failure and nerve damage. Fortunately, he is being treated to slow the progression.
Having experienced firsthand how disheartening it can be to suffer and not be provided hope for recovery, we started a patient association to advocate for education and awareness. Fundamentally, patients and carers themselves must be able to fight the disease.
With awareness and education, change has happened. Doctors are now more mindful of amyloidosis disease features when diagnosing their patients.
Researchers are also finding success in clinical trials to halt and one day cure this condition. The future is brighter. If the patients, caregivers, friends, and family could come together with the medical community to foster conversations and build knowledge of this disease, hereditary ATTR amyloidosis will prayerfully one day be a thing of the past.
So today, if you are reading this column and have a loved one suffering from this debilitating disease, use Amyloidosis Awareness Month as a reason to start telling others about it. There is no shame in letting others know what you are facing. Share your journey with people around you because, unfortunately, hereditary ATTR amyloidosis is only one type of amyloidosis.
Let’s all come together and spread the word. Let’s start saving ourselves and others today.
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.
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