28 February 2023
Hanna Thorpe from Dorset is running the London Marathon in support of her dad, who has been diagnosed with a rare blood condition. Treated in Southampton, Hanna is running for Southampton Hospitals Charity, to thank the staff for the exceptional care and treatment shown to her dad, John.
“I live in Ferndown, Dorset, working for a bespoke Christmas cracker company as an operations manager. Mum and dad still live in Ringwood where I grew up with my brother, Keith.
Dad has a very rare blood related disease called Cold Autoimmune Haemolytic Anaemia or Cold Agglitinin Disease (CADs) .
This is where his body reacts to the cold and prematurely destroys his red blood cells. Approximately one in a million people get diagnosed each year with CADs.
The disease can cause him to become anaemic very quickly, and has resulted in numerous periods of hospitalisation, requiring weekly blood tests, and regular monitoring to ensure that he is on the correct treatment.”
John adds, “It all started in 2016 when I was rushed to Bournemouth Hospital with stomach pains. I was treated for pancreatitis before being discharged.
Shortly afterwards, the stomach pains returned, and so doctors continued to investigate.
I missed Hanna’s wedding in Fiji because I was told not to fly in case it set anything off. My wife and I were devastated to miss the special occasion. It was heart-breaking.
During that time, I had a bone marrow biopsy which came back with the CADs diagnosis. At least we had some answers, although the actual cause of this disease is unknown.
It usually presents itself in your late 50s, early 60s. I was 65 at the time.
The CADs is accelerated with cold weather and infection, which in turn makes me feel very tired as my Hb levels drop and I become anaemic. I can go downhill in just a few days, then it will take me months to recover.
In 2017, I picked up an infection in my pancreas. This later burst, causing Sepsis. I remained in Bournemouth Hospital for weeks.
Two weeks after I was discharged, my wife drove me to the Emergency Department at University Hospital Southampton as I was in such severe pain. I was given a special blood transfusion for CAD patients to help my body produce more red blood cells, and was sent home a few days later.
Then in 2020 I contracted Covid-19. This attacked my liver as it was vulnerable from the CADs, and my body started filling with excess fluid. My legs were so tight I couldn’t walk or even put on shoes.
It progressed quickly, and suddenly I couldn’t breathe. I was immediately admitted to the General Intensive Care Unit in Southampton. They were concerned that if all the retained fluid reached my heart, I might not survive.
It was touch and go for a few days.
Every 10 days I needed around 2 litres of fluid up to be drained to save my life. Since discharge, my wife continues to do this every other day as a retired district nurse.
The team in Southampton tried so many different things to help manage the CADs. From additional transfusions, chemotherapy drugs, dialysis, and special injections into my stomach. The latter worked the best, but only when given the highest quantities to encourage the production of red blood cells.
Currently, I am travelling to Southampton every two weeks. At every stage, the hospital staff have had to accommodate keeping my blood warm by running the blood tests straight to the laboratory. This is because they will haemolyse if allowed to get cold, and then they would need to take more blood. This process begins when temperatures are less than 3’C to 4’C.”
Hanna continues: “The nurses in the haematology department are incredibly supportive and helpful. Dawn in haematology is a super woman! She has been instrumental in ensuring dad gets the care he needs, and I am quite sure that he wouldn’t be alive without her determination and support.
While currently stable and able to live a comfortable life, we remain reliant on the work and support of the Southampton Haematology Department.
Hanna’s running journey
I love running! In 2022 I set myself a goal to run 40 races and earn 40 medals as I turned 40 years old. It seemed only fitting!
This will be my sixth time running the London Marathon. It is unlike any other event I’ve ever done, and it’s a crazy day from start to finish, really making you proud to be British!
Since I confirmed my London Marathon place for Southampton Hospitals Charity, I’ve been working with a trainer. I hope to get my time from 3 hours 24 minutes, down to 3 hours 15 minutes!
The hospital has saved my dad’s life on multiple occasions, so I will be proud to run in his name to thank the staff.”