Living with Multiple Myeloma podcast
Amyloidosis a protein problem - Dr. John Quinn
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Episode notes
In this podcast Dr John Quinn explains how AL Amyloidosis, a rare illness which is not fully understood, can often be tricky to diagnose.
Early diagnosis, however, is key to minimise organ damage and treatments have improved over the past 10 years with high response rates piggybacking off myeloma treatments. There is no typical Amyloidosis patient and many may have been feeling unwell for 9-12 months before a diagnosis is made.
Symptoms of Amyloidosis vary among patients and include generalised tiredness, weight loss, feeling lightheaded, numbness or a tingling feeling in hands or feet, easy bruising, purple spots or bruising around eyes and swelling in the abdomen, legs ankles or feet. Patients may also experience shortness of breath, reduced appetite and altered bowel habits.
In Amyloidosis, the recycling of proteins becomes a problem and light chains are produced which build up in organs around the body. The protein hides in the heart, liver, kidneys gut, skin or nervous system and causes organ damage.
Specialist investigations including blood tests, chest x-ray, tracing of heart (ECG), tests for protein in the urine, biopsy of organs affected if possible are completed. A SAP scan a specific scan is used to determine where amyloid deposits are in the body.Patients supported by the HSE travel to the Amyloidosis centre at the Royal Free Hospital London for this test.
As Amyloidosis is a multi-system disease, Multidisciplinary team collaboration is critical to manage patients. However, according to Dr Quinn the outlook for Amyloidosis patients has never been better with significant improvement in survival rates.
Treatment involves chemotherapy, steroids and targeted therapies including antibody therapy. Clinical trials for patients with light amyloidosis and cardiac involvement will begin soon at Beaumont Hospital. This is the first podcast on Amyloidosis. We will soon share others from patients and nurse specialists.
A huge thank you to Dr. John Quinn for his time.
This show is brought to you by Multiple Myeloma Ireland:
This podcast has been produced by Fuzion Communications.