Around 130 patients with a rare disease have attended a seminar about their illness at hospital which specialises in their treatment.

The condition, ATTR amyloidosis, was part of group “break – out discussions” and by leading experts in the field.

The event took place at Royal Free Hospital which is home to the NHS National Amyloidosis Centre and the event was organised by the recently formed UK ATTR Amyloidosis Patients’ Association.

ATTR amyloidosis is a condition in which a type of protein builds up in various organs of the body. This can affect the functioning of the heart, nerves and gut in particular – and these affects can get worse over time.

There are two types of ATTR amyloidosis – hereditary, which can affect people from early adulthood, and wild-type, which is not hereditary and usually develops in people aged 65 or over.

Lzetwicia Oscar-Jackman, from Enfield, attended the event with her mother Theresa Oscar who suffers with the disease.

“The break-out discussions were fabulous,” she said. “It was great to share ideas with other families, share experiences. Everyone was warm and friendly, and all the staff were really helpful.

“The care we receive here at the Royal Free Hospital has been wonderful.

“From the very first time we came here, the staff have always been so warm and friendly.

“I have never experienced that before, everyone has been so caring from the moment we walked in the door.”

Ruth, 34, from London, has been a patient at the Royal Free Hospital for two years. She said: “The break-out sessions were really wonderful – it was a chance to speak directly to experts and to people who have had similar experiences to you.”

Ruth said her symptoms are milder than others with a more severe type of ATTR amyloidosis.

“I have a little bit of dizziness and tiredness at times, but I am still able to go to the gym and I have a demanding job so for me it is something very manageable,” she said. “The symptoms get worse if I haven’t drunk enough water or if it’s particularly hot. However, medication helps reduce the symptoms and it is hoped that if I stay on the medication, the symptoms will reduce further over time.”