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Alex’s Story

Alex was born with the rare condition HHT

(Hereditary Haemorrhagic Telangiectasia)

an inherited genetic disorder that affects the blood vessels. People with HHT have some blood vessels that have not developed properly and sometimes cause bleeding, known as arteriovenous malformations (AVMs). Although often found in different parts of the body, Alex was severely affected by them within her lungs - Pulmonary AVMs. The severity of her condition may have prevented her from living a full and enjoyable life, but she was determined not to let that happen...

The most striking think about Alex, was that no one could tell she was ill. Despite having oxygen saturation of around 60%, she got on with life in a very positive way. She never used a wheelchair, and she rarely touched an oxygen machine... her acceptance of her condition, and her enthusiasm to strive despite it was admirable.

She studied, she worked, she loved to go out and enjoy herself. She was always at bars and restaurants and parties. She loved to travel, and saw so much of the world and experienced different cultures. She had great friends, and a loving family, and carried herself with a smile- forever encouraging others to have as much fun and she did. Alex loved reading, art, and culture. She was a keen visitor to museums and galleries, as well as the cinema and theatre. She went to the gym regularly and loved to walk and explore, she wanted to see all the world had to offer and experience everything she could. She worked hard to train her body how to cope with such a limited amount of oxygen.

Very few people knew the severity of her condition... she didn’t want to be treated differently because of it and didn’t want people to worry about her. Although she knew that her life was likely to be a relatively short one, she took this as an advantage instead of an obstacle - everything she wanted to do, she did - there was no waiting for tomorrow, she enjoyed her life today.

Alex went through several major surgeries. At age 19 she had a brain abscess, which was successfully removed, but resulted in her developing epilepsy. She had many successful lung embolisation operations, and later developed rheumatoid arthritis. None of this dampened her spirit.

The covid 19 pandemic meant she couldn’t keep up the active lifestyle she had maintained for so long, which had a knock on effect on her physical condition. She went into hospital for her usual lung scans, where it was determined that she may need to consider a lung transplant. Her pulmonary AVMs had become more numerous, and were too small to operate on. While being reviewed for transplant surgery again, she passed away peacefully in her sleep on the 14th May, 2021. She didn’t know she was dying, and she did not suffer. She was 33 years old, and it was 5 weeks before her wedding day.

q-b-iconOften I’d walk back into a room and Alex would be pretending to be dead. She had a wonderful sense of humor.q-s-icon

HHT expert Professor Claire Shovlin, who treated Alex for many years, believes that it was her attitude and her enthusiasm which kept her alive and happy for so long.

By her physical condition her life should have been much shorter, but her determination to live and train her body to cope with her illness extended her life by 10-15 years. A truly remarkable achievement by a truly remarkable woman.

Alex’s fiancé (also Alex), and family have set up the Alexandra Murphy HHT foundation in the hope that her story can help to inspire others to live the best life they can… to hold their heads up, and go out into the world and enjoy themselves.