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Be the Link on World Amyloidosis Day

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What can advocates do about a rare, complex disease that impacts people across the globe but is highly unfamiliar even to medical professionals? Raise awareness.

And that’s just what is planned for October 26, the second World Amyloidosis Day.

Launched by patient organizations across the globe, the annual awareness day now serves to connect the amyloidosis patient community with the general public. Encompassing organizations from 18 countries across four continents, the initiative continues to grow.

Understanding Amyloidosis

Amyloidosis is caused by a build-up of abnormal protein in different bodily organs. Depending upon how the disease manifests, patients can experience a range of debilitating symptoms.

Because the disease is progressive and multifaceted, amyloidosis presents a tremendous burden for patients and their carers.

There are four different types:

  1. AL amyloidosis: Impacts the heart, liver, kidneys and peripheral nervous system and can include symptoms such as breathlessness, heart failure, fatigue and digestive problems.
  2. AA amyloidosis: Impacts the kidneys, digestive system, liver and nerves and can include symptoms such as fatigue, loss of appetite and oedema in the legs.
  3. Wild-type ATTR amyloidosis: Impacts the heart, auditory system, digestive system and peripheral nervous system and can include symptoms such as lumbar spinal stenosis, carpal tunnel syndrome and fatigue.
  4. Hereditary ATTR amyloidosis: Impacts the heart, digestive system and peripheral nervous system and can include symptoms such as weight loss, heart failure and breathlessness.

Need for Awareness and Education

Although the different types of amyloidosis vary in their presentation and symptoms, they all share the need for increased awareness and education.

For many amyloidosis patients, the diagnosis and treatment process is a struggle. Patients spend, on average, four years consulting with at least four different specialists before receiving an accurate diagnosis. Shortening the diagnostic odyssey can significantly improve the prognosis for patients, but that requires increased awareness.

This October, advocates can help be the link between patients and their larger communities by raising awareness and following activities happening across the globe using the hashtag #BETHELINK.