Dolores remembered as family welcome new drug for rare pulmonary arterial hypertension illness

Emer Gallagher lost her mother Dolores at the age of just 58 on October 5, 2023.

The Bogside mother-of-two had fought the illness for nearly two decades, travelling to doctor and hospital appointments in Derry, Belfast and London as she and her family sought to navigate the rare condition and its complications.

Just four months before Dolores passed Emer was blessed to have her mother celebrate her wedding with her. At the time of Dolores’ passing Sotatercept, an effective new drug for PAH patients, wasn’t available. But since then the Gallaghers have lobbied for it to be made an option for families like theirs.

“While it was too late for our mother, we felt it was important to ensure this treatment was available here for others who may benefit from it,” said Emer, who outlined how Dolores had battled the cruel illness for nearly twenty years.

"She started experiencing symptoms when I was in first year at St. Cecilia’s, alongside conditions called connective tissue disease and systemic sclerosis.

“She spent years travelling to hospitals in Derry and Belfast, undergoing dozens of scans and tests before finally being diagnosed with PAH. At that time, my parents were told it was a very rare illness and that life expectancy was not good,” said her daughter.

PAH affects the blood vessels carrying blood from the heart to the lungs, explained Emer. The arteries can become narrowed, stiffened or blocked, making it harder for blood to flow.

This puts increasing strain on the right side of the heart and makes it more difficult to pump blood to the lungs to collect oxygen for circulation around the body.

"My mother was a battler and did everything the medical professionals asked of her to try to keep the condition at bay.

“In 2014, her health took a really bad turn. After weeks of being in and out of Altnagelvin and Dundonald hospitals, she was eventually transported by air ambulance to the Royal Free Hospital in London for emergency surgery and to have a pump fitted to dispense lifesaving medication.

“In 2022, mammy's health deteriorated again, and doctors told her the illness had progressed. She began attending palliative weekly daycare at the Foyle Hospice,” Emer added.

At this point in her treatment Dolores and her husband John asked about Sotatercept, which was being trialled at the time, and whether it was available. Sadly it wasn't.

Emer outlined how she discovered earlier this year that the new drug was being made available in England, Scotland and Wales. She contacted Ciara Ferguson MLA to see if patients here could access the treatment.

“Ciara submitted a question to the Health Minister and we were pleased to learn this week that the treatment will indeed be available to those who meet the criteria. The Minister subsequently confirmed that Sotatercept for treating PAH in adults is commissioned on a cost-per-case basis in the North.

“His Department has received six requests for treatment since June 2026, all of which were supported in accordance with the relevant criteria. Most requests came from Belfast Health and Social Care Trust, with the South Eastern Trust being the only other trust to have submitted requests to the Strategic Planning and Performance Group,” said Emer.

Although the provision of the treatment has come too late for Dolores’ heartbroken husband, her two children and her two grandchildren, the family are grateful other PAH sufferers will now be able to avail of the drug.

Today November 6 marks the annual awareness day for Pulmonary Hypertension (PH) and Pulmonary Arterial Hypertension (PAH).

Mrs. Ferguson, who sits on the Assembly’s All-Party Group on Rare Disease, said: “It’s important that as elected representatives we understand the challenges facing people living with rare conditions across the North, which affects one in 17 people here.

“I commend Dolores’ family for their continued support for those living with this condition. We support the annual awareness day, held on the first Friday in November, which aims to raise the profile of pulmonary hypertension and improve understanding of this rare and challenging disease.”

Emer observed: “PH and PAH are very rare conditions. With awareness day approaching, we felt it was important to raise awareness, in the hope that it might help save a life or let someone know more about these illnesses. We would like to thank all the doctors and staff at Racecourse Medical Practice, Altnagelvin, Dundonald and the Royal Free Hospitals for their help and dedication over the years. And the charity work the Pulmonary Hypertension Association does. We are also indebted to the day-case team and volunteers at the Foyle Hospice, where Dolores made many friends during her final year. We will always be very grateful to them all.” For more information visit: phday.phauk.org