A Hampshire woman says taking part in a medical research trial has transformed her life after years of living with a rare genetic condition that caused agonising swelling.

Janie Allen, 61, from Odiham, is encouraging others to consider taking part in health and care research after a clinical trial helped bring her hereditary angioedema (HAE) under control.

Her appeal comes as new figures from the National Institute for Health and Care Research (NIHR) show more than 38,000 people took part in health and care research across Hampshire between April 2025 and March 2026.

Retired biology teacher Janie inherited HAE from her mother. The rare genetic condition causes severe swelling in the face, hands, feet and intestines and can become life-threatening if it affects the throat. Her grandfather, Arthur Hoskison, died from the condition in 1938, aged 32, after swelling affected his throat.

She first noticed symptoms when she was about 11 but was not formally diagnosed until she was 36.

She said: "For years I've managed the agony of swelling, particularly in my intestines. It could be so painful. I was often taking strong prescription painkillers, with several hospital visits for tests trying to find out what it was.

"Once diagnosed I took the standard medication for the condition, which helped, but I would still get minor swelling and every couple of years, a full blown attack that would be agony."

In 2025, Janie was offered the chance to take part in a clinical trial at Frimley Park Hospital testing a new tablet designed to prevent the painful and unpredictable swelling caused by HAE.

She said: "I jumped at the chance. I've benefitted from previous medical research, so this was my way of giving back. I also knew the new medication specifically targeted the defect causing my HAE, offering me hope for better control."

The trial involved taking one tablet a day alongside monthly hospital check-ups. Janie did not know whether she was receiving the new medication or a placebo while researchers compared the results. She has now moved into the next phase of the study, where she is guaranteed to receive the medication while researchers monitor its long-term safety and effectiveness.

She said: "Since starting the trial I've had no flare-ups, so no swelling and no pain. It's been amazing. I also have so much more energy that I can run, cycle and train consistently.

"There were so many things I couldn't do because my condition was never totally under control. But this has now changed.”

“ This year I even achieved a lifelong dream by completing a marathon over the South Downs - something I once thought was completely impossible. For the first time in my life, my body is in a state of health and consistency."

The NIHR said 38,000 people across Hampshire took part in health and care research during the year. Studies included newborn genetic screening, cancer research, heartburn screening and asthma research.

Around 31,000 Hampshire residents have also signed up to the NIHR's Be Part of Research service, which allows volunteers to register their interest in taking part in future studies.

Prof Saul Faust, Health and Care Director at the NIHR South Central Regional Research Delivery Network, said: "We are incredibly proud of the people in Hampshire who have stepped up to be part of the solution to some of our biggest health challenges. It's great to know that Hampshire's participants are part of a massive movement to unlock better treatments for cancer, stroke and many other diseases right here on our doorstep."