Hi it's HAE awareness day 16th May 2015. We are raising awareness of this deadly condition which has a 30% death rate affecting both adults and children. We lost my mum three years ago when she had a fall which caused her face, throat and body to swell up. She was treated in A & E for anaphylaxis which she didn't respond to. My daughter and I were diagnosed properly last year after I had over 18 admissions.
Hereditary Angioedema affects children and adults and is very rare 1:100,000 people have it. When we have been admitted none of the drs or nurse's are aware of the condition or the treatment required. Which show's we need to raise awareness across the UK and educate everyone including the medical professionals.
The symptoms of HAE causes swelling of the face, throat, larynx, tongue which mimics anaphylaxis. All limbs and torso swell as well as joints which mimics arthritis, the abdominal swelling causes the same symptoms as gall bladder and apendicitis. Any trauma, pressure, stress or infection can trigger an attack. My daughter had a dance show the other week and when she came home the soles of her feet had swollen and we're very painful, but she soldiers on as she doesn't want to miss out on activities. She is also a scout and goes on camps etc.
Many parents with children with HAE don't allow their children to take part in activities but we are of the mindset that this is no way for a child to live. Everyone is aware of Harriet condition, she carries her IV meds with her and knows she has to go to A&E if an attack starts on her face or throat. She gave a talk to her class in yr6 so all her friends and teachers are aware of the condition and help look out for signs.
At the moment we are not able to have treatment unless our airways are at risk or very severe abdominal swelling. We have to try and manage the pain etc for any other type of swelling which can be as frequent as every two to three days. Harriet never likes to miss school but at the moment she has less than 80% attendance.
We are setting up an info stand at school and at the local shop, sending out information to family and friends and holding a few online auctions to help raise awareness and to raise funds for HAEUK. These funds will go towards the needed research to find a cure and to help make treatment available to those who needed it when they need it. This can make a big different to the future for Harriet and other children. If you are able to make a contribution no matter how small it all helps go to a good cause and passing on the message about HAE will help to save lives.
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