A Sussex woman who set up a national health charity from her own front room has been awarded an MBE.
Kay Yeowart, who lives in North Chailey, has been recognised in the Queen’s Birthday Honours for her personal contribution to setting up the Pulmonary Hypertension Association UK (PHA UK).
It provides information, support and advice to people with the rare heart and lung condition, pulmonary hypertension. The charity has nearly 3,000 members and funds thousands of pounds worth of medical research and health education initiatives to promote better awareness, diagnosis and treatment.
It was set up in 2000 by a small team of volunteers – patients, family members and health professionals – and Kay ran the charity from her front room.
Kay, whose son Lewis has pulmonary hypertension, said: “At first we used to run the association from my home. I organised the meetings of trustees; wrote, printed off and posted out newsletters and answered the helpline from here.
“Setting up PHA UK involved a tremendous amount of effort by a small group of volunteers before we were able to take on our charity’s national offices in South Yorkshire. I’m proud to have been part of that and I’d like to accept this honour for the charity as a whole.”
Kay, 53, is still a trustee and secretary of PHA UK. Over the last 15 years she has petitioned Parliament about the funding of drugs for PH, visited Downing Street to raise awareness of PH and spoken at international medical conferences.
Her family’s own experience of pulmonary hypertension led her to get involved in setting up the UK’s only charity dedicated to this disease.
She said: “We were very thankful for the way our own son, Lewis, responded so well to his medication for his PH that I wanted to give something back.”
Lewis suddenly became ill as a teenager in the late 1990s. He was severely breathless, suffering with fatigue and so weak he was given an electric scooter to get about. Awareness of pulmonary hypertension was minimal then and his parents, Kay and David, had to take him to New York in 1998 to get him a diagnosis of PH and start a course of targeted medication for the disease. Lewis returned to the care of Great Ormond Street Hospital.
Kay said: “Lewis had previously been very healthy and news of this devastating disease was overwhelming.
“But, we were very lucky, Lewis responded so well to his medication and his symptoms are now completely under control and he leads a full and busy life. Many others are not so lucky.”