Clinicians launch first service for amyloidosis patients in Midlands region
Clinicians at UHDB have set up the first service in the region to help to treat patients suffering with the rare condition amyloidosis.
Amyloidosis is the name of a group of serious conditions caused by a build-up of an abnormal protein, called amyloid, in organs and tissues which can lead to organ failure. There are two main types; AL amyloidosis and ATTR amyloidosis. As well as being a rare condition, amyloidosis is also difficult to diagnose and treat as the initial presentation is usually subtle and could involve virtually any system.
At present, there is only one dedicated centre for this condition in the UK, The National Amyloidosis Centre (NAC) is based at University College London. Patients are often required to travel there for diagnosis and to establish a treatment plan.
The new amyloidosis service at the Royal Derby Hospital is a direct collaboration between Cardiology (Dr Husnat Ahmed), Haematology (Dr Firas Al-Kaisi, Dr Sarah Hartley, Dr Caroline Harvey and CNS Chris Skeet), Radiology (Dr Jim Birchall) and Renal (Dr Nitin Kolhe) aimed at providing a multidisciplinary input for patients with amyloidosis closer to home.
Dr Firas Al-Kaisi said: “Diagnosis in amyloidosis can often be delayed and patients tend to present to multiple specialties before a diagnosis of amyloidosis is made. We aim to tackle this issue by creating a first in the region, dedicated amyloidosis service. We believe that we have all the diagnostic tools and clinical expertise to ensure that we are providing an excellent service”.
Dr Husnat Ahmed said: “We have developed a new local amyloidosis / cardiac amyloidosis management pathway with the aims of reducing diagnostic delay in patients suspected to have amyloid heart disease / systemic or organ specific amyloidosis, and to improve patient care and patient comfort by providing almost all the investigations closer to their homes here in Derby, saving them the long, often stressful, journey to London”.
The amyloidosis multi disciplinary team (MDT) is currently working with the NAC in London towards becoming a regional hub for the patients with this condition and to offer the treatment they need closer to home.
Dr Ahmed added: ”Even for some of the highly specialized tests like genetic testing for ATTR amyloidosis, we have developed a pathway to collect the samples here in Derby and send the samples to the NAC, thus reducing the need for the patients to go in person”
Treatment for amyloidosis can be very complicated. If this is not initiated early, patients may not recover their normal organ function. ATTR amyloidosis, if diagnosed early, can be treated with disease modifying novel agents (usually in conjunction with or directly under NAC) with reduction in morbidity and improvement in survival rates.
Although AL amyloidosis in incurable, the outcomes for patients can be improved if patients start treatment early before their organs incur significant damage.
For more information on amyloidosis, please visit the NHS website (opens in new window) >