A father and daughter shared experiences and connected with other people living with a rare disease during an international HAE conference.
WOODSTOCK - A father daughter duo traveled to the Hereditary Angioedema international conference in Spain.
Ken and Amanda Howlett both suffer from the illness. H.A.E is an extremely rare blood disease that causes immense swelling in the face, airways, and can also cause abdominal cramping.
The first part of their trip consisted of a communal walk in Madrid.
"The first day out we walked 20 km so there was lots of stiffness, and soreness, and blisters, and stuff the following morning but we got up and did another 20 km the second day."
Ken says they were joined by 80 other people from around the world.
"We met a lot of people from so many different places and there were so many stories to share. It was amazing how similar the stories are and it doesn't matter where you are in the world."
Amanda says before getting involved with the Canadian H.A.E organization she had never met someone outside of her family that suffered from the disease.
The international H.A.E conference allowed the pair to meet people that really understand what they go through on a daily basis.
"It is just amazing to see how similar people's experiences are going through the same things especially for something that is so rare. In a regular situation nobody else knows what you are going through but then you go through something like this - everyone there has either experience as a patient or as a caregiver."
The duo work hard generating awareness about the rare disease but the focus of the conferences they attend is about learning and sharing experiences.
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