A Woodstock woman with rare disorder called HAE is hoping to raise awareness and educate people.
WOODSTOCK - A lawyer from Woodstock is hoping to raise awareness about a rare disorder she has lived with since birth.
Amanda Howlett has Hereditary Angioedema or H.A.E. She wants to raise awareness to help others living with the disorder that she inherited from her father.
"In my situation, someone else had to go through all the hard stuff so I didn't have to, my father had to go through all of that, he was not diagnosed until his late 20's. When I was born I knew what I had, so I have grown up my entire life knowing what to expect, what my symptoms are and how I can control this and generally not having to go through a lot the problems that people who are not diagnosed yet have to go through."
Howlett says she hopes her story can help others who may not be diagnosed yet.
"If I'm getting the word out there for something that is so rare, if a patient who has been going through the same thing or a doctor or a nurse or anyone who had to see a patient, maybe they will have heard my story and it will be something that will be in their mind, then maybe someone can be as lucky as I am and not have to go through misdiagnosis or mistreatment. Another reason I like to promote advocacy as well is because I have always had someone around who was going through what I was going through and for a lot of people that is not the case because it is so rare, it is entirely possible they could live their whole life and if they were the first person in the family to have this diagnosis, then they would never know someone who has it because it is so rare. It's important to get the word out there to let people know they are not alone, there is not a lot of us out there but we are out there."
HAE causes severe swelling on your hands, face, feet and other body parts, it also causes nausea and vomiting when the swelling is in the abdominal area. It can be fatal if the swelling happens in the throat. Only 860 people in Canada suffer from the rare disorder.