A Teesside University student has received a prestigious grant to help fund research into a rare disorder which has affected her twin sister.

Pippa Adams has been awarded a significant grant from the Hereditary Angioedema Patient Charity HAE UK to help with her study into the mental health of people with the condition.

Hereditary Angioedema (HAE) is a rare, genetic condition which affects less than one in 10,000 people. Symptoms include episodes of large, painful swelling in various parts of the body including the hands, feet, face and airway. Patients can also suffer severe abdominal pain, nausea and vomiting as a result of the swelling.

The most dangerous are throat swellings which, prior to modern treatment, were often fatal and still need to be acted upon swiftly.

Pippa, 21, an MSc Health Psychology and Clinical Skills student, began researching the condition during her undergraduate degree.

She said: “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.

“During my undergraduate degree I was confused about why she had not been provided with information about the implications of living with HAE.  I decided I wanted to find out about how HAE affects people. However no previous research had been published about the experience of living with the condition, so I decided to do some research for my dissertation. I collected various accounts from women, as they generally have more attacks than males, and used their experiences of the condition to inform my dissertation.”

Pippa, originally from Durham, progressed on to the master’s degree and was offered funding to expand her research.

“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” explained Pippa.

“Because there is a lack of awareness of HAE, one of the main issues sufferers have is legitimacy – people not understanding or believing them because it is such a rare condition. That can be 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.

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

Pippa believes that studying at Teesside University has given her both the skills and confidence to carry out research which can have a real impact.

She added: “There is a culture here which encourages students to participate in significant research projects. I have received a great deal of support and I am definitely seeing the benefits.”

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