A NEW support group across Mid and South Essex is bringing heart patients with an underdiagnosed condition together to talk about their experiences.

Cardiac amyloidosis occurs when abnormal proteins build up in the heart, making it unable to pump blood properly. The new support group, which includes patients, clinicians and clinical nurse specialists, met for the first time earlier this month.

Dr Ambreen Gul, Consultant Cardiologist, said: "This condition is not rare but is often underdiagnosed. One of the aims of the new patient support group is to share more information so patients can be identified and treated sooner."

One of the patients who joined the first group was Trevor Spiro, 86, who lives in Maldon. He said: "I'd never even heard of amyloidosis before I was diagnosed with it last year. My consultant cardiologist at Broomfield Hospital noticed it and referred me for a specialist scan. I started my treatment very quickly after that.

"I'm really pleased to be part of the new support group - it's very helpful talking to other people with the same condition who really understand what it's like."

Charlotte Moore, Heart Failure Clinical Nurse Specialist, said: "Most of our patients don't know anyone else who has it, which can make them feel isolated. The group gives them an opportunity to ask questions and talk to each other about what it's like to live with amyloidosis every day."

A specialist heart imaging service was launched at Broomfield Hospital a year ago, which was a huge boost for patients as previously they had to travel to London for the scan.

The service receives referrals from across Mid and South Essex NHS Foundation Trust, leading to more than 65 patients being scanned so far. Of those, 15 patients were found to have the condition.

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Once a patient tests positive for the condition, staff work closely with the National Amyloidosis Centre in London, which is licensed to provide the medications for patients.

Dorothy Bull, 86, is one such patient. She said: "I found out I had cardiac amyloidosis about 18 months ago and used to have to go into London for treatment. Now, my medication is sent to me by courier and if I have any questions, I email Dr Gul, who always replies to me.

"I'm relieved that I don't have to travel to London all the time as I'd find that difficult and if I need any further scans, I can get them done close to home."

By improving awareness, access to diagnosis and ongoing support, the team is helping patients feel more connected, informed and supported.