A STUDENT is carrying out research into a potentially fatal rare disorder which has affected her twin sister.

Pippa Adams, from Durham, is looking into the mental health of people with Hereditary Angioedema (HAE).

The rare, genetic condition affects less than one in 10,000 people and its symptoms include episodes of large, painful swelling in various parts of the body including the hands, feet, face and airway.

Ms Adams, 21, is a health psychology and clinical skills student at Teesside University, and decided to begin researching the condition after seeing how it affected her sister.

“When my sister was referred to adult immunology she started to understand the implications of living with the condition, but was provided with limited information about the daily effects.

“I was misdiagnosed for 10 years and told I would have attacks as I had the condition, but it has only affected my sister.

“She is able to manage it quite well and is not as badly affected as other people.”

Patients can suffer severe abdominal pain, nausea and vomiting as a result of the swelling, with the most dangerous being throat swellings.

Prior to modern treatment, such swellings were often fatal and still need to be acted upon quickly even with new treatments.

But Ms Adams believes more needs to be done in understanding how HAE affects people’s lives,

“Because there is a lack of awareness, one of the main issues suffers have is people not understanding or believing them because it is such a rare condition – that can very disheartening.

“There is medication available, but there are numerous side effects such as weight gain blood clots, ulcers and even strokes.

“As well as raising awareness and examining the experiences of those with HAE, I am also interested in the mental health of people with the condition and the psychological impact it can have.”

Ms Adams has also received a grant from the Hereditary Angioedema patient charity HAE UK to help with her research.

The charity looks to support all UK patients with the condition and holds a patient day every year to allow people to meet HAE Experts and others who know what it is like to live with the rare condition.

“I was really shocked when I was awarded the research grant, but it will enable me to conduct a much more thorough study and engage with people across the country” said Ms Adams.

“I am extremely grateful for this funding and this is definitely the kind of work I would like to be involved with when I have finished studying” she added.