Linda Sheehan
participant in the IMPALA 2 clinical trial
Prof Cormac McCarthy
UCD and St Vincent’s University Hospital
Linda Sheehan shares how her clinical trial journey began in 2022 with a bad chest infection and how her life changed.
She became so ill that she required 24-hour oxygen and a wheelchair on days out. Following referral to the Rare Lung Disease Clinic at St Vincent’s Hospital, Sheehan was diagnosed with Autoimmune Pulmonary Alveolar Proteinosis (aPAP). This rare condition, affecting seven out of one million people, occurs when a liquid buildup in the lungs prevents oxygen from entering the bloodstream. Around this time, Prof Cormac McCarthy was setting up the IMPALA 2 trial in the Clinical Research Centre, UCD, to test if a protein called GCMSF could combat this buildup.
Participating in the trial
“At first, I was a little anxious, as the trial was double-blinded, meaning neither I nor the trial team knew if I was getting medicine or a placebo,” says Sheehan. “I had breathing and blood tests to see if I was healthy enough, but also sick enough, to participate. Thankfully, I fit the criteria.”
“I learned how to use the nebuliser that turns liquid medicine into steam, which I inhale into my lungs. Sterilising is paramount, as is storing the medicine in a specialised cooler bag in the fridge.”
“Monthly train journeys from Limerick were arduous at first but became routine. Blood tests to measure my body’s reaction and the amount of oxygen in my blood were a painful necessity, but the treadmill test to measure my response to exercise was the hardest part. By then, taking the medicine and sterilising the equipment was so easy I could do it in my sleep.”
“By six months, I was using less oxygen and walking farther, and within 18 months, I was off supplementary oxygen completely. Today I can walk, dress, shower and work part-time unaided. The trial has truly changed my life — I’ve become independent again, thanks to this study.”
it demonstrates the importance of access to trials and their potential to transform the lives of people living with rare diseases
Impact of clinical trials
“Linda’s story highlights the power of harnessing expertise through European Reference Networks and Clinical Research Centres, and programs like the Rare Disease Clinical Trial Network. Above all, it demonstrates the importance of access to trials and their potential to transform the lives of people living with rare diseases,” said Prof McCarthy.
