Patient with rare conditions suffers 'swelling attacks'

Dawn Green was diagnosed with Acquired Angioedema (AAE) in June 2018 and, while being investigated for an underlying cause, was found to have Splenic Marginal Zone Lymphoma, a type of blood cancer.

She has been cared for by the Immunology team at the John Radcliffe Hospital, run by OUH, for Acquired Angioedema since her diagnosis.

AAE is an extremely rare condition which makes the person susceptible to swelling of the tissues in the body.

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Mrs Green experiences swelling of her hands and feet, intestines, face, and tongue, leaving her in severe pain, and swelling in the throat can be potentially life threatening. These ‘attacks’, which can occur every few days to a few weeks.

Treatment for lymphoma is chemotherapy, whereas AAE needs infusions, injections, and having constant access to syringes and medicines.

Dawn Green with grandson Joshua

Mrs Green wanted to say thank you to the immunology team for the care she has received throughout her illness.

The 62-year-old from Aylesbury is paying tribute to staff for going above and beyond following the death of her husband, Ron, earlier this year.

She said: “My husband passed away unexpectedly at the beginning of June 2020. Naturally, this caused terrible stress and had a very negative impact on me. I knew I wouldn’t be able to get through the funeral without the necessary treatment. I rang the OUH team and they agreed I should go over to them and they would administer my infusion for me.

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“When I arrived the next day everyone was so lovely. The lovely Holly (Holly Hurst, a Specialist Nurse Practitioner in Immunology), who had trained me previously to inject myself, came in on her day off to give me my infusion herself.

“The department is so important for people like me, of which there are not many with this unusual condition.

“Just knowing that there is someone at the end of the phone that I can speak to is hugely reassuring for me. I feel extremely lucky to have been referred to the immunology team, and I cannot thank them all enough for my care.”

Almost all of Mrs Green’s 20 attacks have required an emergency department admission due to airway swelling and sometimes severe abdominal swelling.

She has a compromised immune system and, although she is in remission for the Lymphoma and the AAE is reasonably well controlled, she suffers with lots of infections. However, her attacks are less frequent than before.

AEE is a rare condition and it is thought there are fewer than 150 sufferers in the UK.

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Mrs Green added: “Due to my frequent use of my injections and infusions, it has not always been possible for me to replace it from my home in Aylesbury. But just a phone call or email to the immunology team and they sort it for me.”

Dr Rashmi Jain, a consultant immunologist at the trust, said: “We have an excellent team of nurses, doctors, and ancillary staff in the immunology department.”