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Ruby is 9 years old and was diagnosed as having HAE (hereditary  angioedema) in 2013. This is a very rare, incurable and potentially life threatening disease, which causes swelling of the tissues which can last from 3 to 5 days and can be huge. These swellings can occur on any part of the body; hands and feet, arms and legs, trunk, intestines, genital organs, face, tongue, neck and airway. The frequency of attacks can vary from once or twice a year (like Ruby's mum, Faye) to every few days in the most severely affected patients, such as Ruby. Intestinal swelling causes sickness and diarrhoea and very severe pain.  

HAE UK is the UK support group for HAE patients. The mission of HAE UK is to help it's members access HAE management that will allow them to gain good control over their symptoms, so that they can maintain independence and a good quality of life. The support they have given to Ruby & Faye and their family has been invaluable.

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