There are few people that may ever claim to understand MedicAlert Foundation member, Amanda Tionisio’s, extremely rare condition, but many of you will know the anxiety she feels living with a life-threatening disease.
“I was diagnosed with HAE (Hereditary Angioedema) at the age of 5 when my Father received his diagnosis. For many years prior, the condition was thought of and treated as an allergic reaction,” Amanda says.
“I have lived nearly my entire life with HAE and it is all I have ever known.”
Amanda says it was her immunologist who suggested she contact MedicAlert, as it’s particularly important when living with a chronic rare disease that medical professionals and others around you are away of your condition in the case of an emergency.
“With a rare disease such as HAE there is an increased risk of fainting and there is also the risk of oedema in the airways – these are times when it would be difficult to convey to others about the condition and having the bracelet alerts them to the condition,” Amanda says.
“I am also anaphylactic to Fresh Frozen Plasma so my specialist advised me that in the case of an accident where I wasn’t able to respond – having that information on my bracelet could be the difference between life and death.”
With four young children to look after, and two of her girls also having HAE, Amanda says MedicAlert bracelets have taken on a newfound importance in her family.
“My two daughters with HAE are also MedicAlert members,” Amanda says.
“It is very frightening as a parent of a child with a chronic and potentially life-threatening disease, to send them out of your care. It requires a lot of trust in those around them and having their bracelets on provides a sense of relief that their condition can be identified.”
“I feel protected knowing that my family's medical information is available in the case of an emergency, particularly if something should happen to any of us and we are far from home or if I am alone with my 4 young children.”
Amanda’s passion to help her girls, and others affected by the condition, has seen her become the Secretary of HAE Australasia, where she points out their focus is in their name.
“H is about ‘hope’, A is about ‘Advocacy, and E is about ‘Education’, because together we know we can beat this,” Amanda says.
For more information about HAE please visit www.haeaustralasia.org.au/