For Kimy Clendon, the simple act of making a bed or climbing a single flight of stairs to her office became impossible. After two years of experiencing chest pain, major fatigue, body aches, swollen legs, and an irregular heartbeat, the former care worker was forced to quit her job in February 2025.
Following extensive tests and hospital visits, Clendon was informed in November that she likely has amyloidosis. This incurable condition occurs when an abnormal protein called amyloid builds up in the organs, which in Clendon’s case is believed to be affecting her heart.
Understanding the Disease
Dr. Rodger Tiedemann, an associate professor of medicine at the University of Auckland and haematologist at Auckland City Hospital, explains that different types of amyloidosis require different drug treatments.
AL amyloidosis is caused by a “pre-cancer clone” of plasma cells in the bone marrow. These cells produce a protein that is not properly folded, which then deposits in tissues such as the gut, nerves, kidneys, and often the heart, disrupting their function.
ATTR amyloidosis involves the misfolding of a different protein, known as the TTR protein, which is produced by the liver. Dr. Tiedemann notes that because amyloid deposition is “very tricky” to remove, most treatments focus on preventing the disease from progressing.
A Path to Recovery
While the condition is incurable, some patients have seen significant improvements. Tove Jensen-Munroe was diagnosed with myeloma (blood cancer) and AL amyloidosis in January 2017, a diagnosis that meant her heart could fail or “harden.”
Through a combination of chemotherapy and the drug bortezomib, Jensen-Munroe’s heart recovered. Despite a relapse in 2023, she underwent a stem cell transplant in 2024, which further improved her heart function.
Today, Jensen-Munroe describes herself as doing “fantastic.” She now swims weekly, walks her dog twice a day, cycles 60km on weekends, and works part-time at her private massage practice.
The Challenge of Medication Costs
Access to certain treatments remains a significant hurdle. During her 2023 relapse, Jensen-Munroe was told that the drug daratumumab was her “best option,” but the medication is unfunded and costs $220,000 per year.
Dr. David Hughes, the advice and assessment director for Pharmac, stated that the agency has four funding applications for daratumumab on its options for investment list, including for AL amyloidosis.
Pharmac has indicated a desire to fund these medicines if the budget allows. However, a final decision may depend on supplier negotiations with Janssen, available budgets, and the prioritisation of other medicines.
Raising Awareness
Clendon, who previously suffered a cardiac arrest in 2010 and spent several weeks recovering in Rotorua Hospital, is now using her experience to warn others. She urges anyone experiencing shortness of breath or a pounding heart to visit a doctor immediately.
After connecting with Jensen-Munroe, who facilitates a national support group for AL amyloidosis, Clendon found hope. While acknowledging there is no cure, she noted that the disease is manageable, citing Jensen-Munroe’s fulfilled life as evidence.
Frequently Asked Questions
- What is amyloidosis? It is an incurable condition where an abnormal protein called amyloid builds up in organs, affecting their function.
- What is the difference between AL and ATTR amyloidosis? AL amyloidosis is caused by plasma cells in the bone marrow producing misfolded proteins, while ATTR amyloidosis involves the misfolding of TTR proteins produced by the liver.
- Is there a cure for amyloidosis? No, there is no cure, but the condition can be managed, and some patients may see reversals in heart failure following treatment.
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