Duston woman helps launch charity to help survivors of rare heart condition

Survivors of SCAD
Survivors of SCAD

A survivor of a rare type of heart attack has helped launch ‘Beat SCAD’ a UK charity aiming to raise awareness and support survivors of a rare heart condition.

The charity was launched on Saturday.

Karen Rockell from Duston had a SCAD heart attack five years ago. In 2010 she was given a very successful liver transplant because she developed liver cancer due to an autoimmune condition. Six weeks later she had a SCAD heart attack. Finding no support for people who have had a SCAD in the UK, she turned to social media and found other survivors on a SCAD Facebook page.

She has been actively involved in supporting SCAD survivors since 2012.

Spontaneous Coronary Artery Dissection (SCAD) is a rare and under-diagnosed heart condition that affects people with few or none of the normal risk factors for heart disease. SCAD occurs when a tear or bruise develops in a coronary artery and restricts or prevents blood flow in the heart.

It cannot be predicted or prevented and the cause is unknown. Many SCAD patients experience delayed diagnosis, a lack of information about the condition, as well as confusion and depression at being unable to get answers. Often patients know more about SCAD than the medical staff treating them.

Survivors who met on social media sites have, over the past few years,supported each other, raised awareness of the condition and raised money for research. Beat SCAD aims to build on these patient-led initiatives.

The charity has three aims:

Raise awareness of SCAD among medical professionals and those who have had a SCAD diagnosis

Provide support for SCAD patients as well as family, friends and caregivers

Promote and raise funds for research.

Beat SCAD was established by SCAD survivors Rebecca Breslin (Chair), Karen Rockell (Secretary) and Debbie Oliver. Jackie Stopyra is Treasurer.

One of the patient group’s major achievements has been to work with the Leicester Biomedical Research Unit at Glenfield Hospital to create a research project into the causes of SCAD*. Rebecca said: “We have an amazing team of researchers in Leicester who are working hard to help us find the answers we desperately need, answers that will save lives. The strength and determination within our group is immense – together, we will beat SCAD.”

Beat SCAD, a UK charity that aims to support those who have been diagnosed with Spontaneous Coronary Artery Dissection, was launched on Saturday. The launch took place during the first ever conference for UK SCAD survivors held in the Charles Palmer Suite generously donated for the event by Leicestershire County Cricket Club. A record 58 SCAD survivors attended the conference as well as some partners and family.