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.
Oxford OPP Lay Charges After Warrant Execution
Camping Season is Open at Pittock
Application Window Open for Oxford County Grants Program
PJHL Preview - Schmalz Cup Final
Oxford Winds Celebrates 30 Years
Nomination Period Opens for Municipal Election
Theft in Thamesford is Under Investigation
Winning Lotto 6/49 Ticket Sold in Oxford
Thamesford Lions Club Celebrates 65 Years
Yellow Frost Advisory Issued for Oxford
News Poll: Schmalz Cup 2026
Realtors Care Food Drive Returns Next Week
PJHL Playoff Recap - April 29th
Charges Laid After Altercation in Woodstock
New Partnership Protects Land in Oxford
Bomb Threat Unfounded in Woodstock
Big Projects Announced for TVDSB
Tick Season Reminders from Southwestern Public Health
PJHL Playoff Recap - April 28th
Highway Construction Approaching in Burgessville
Comments
Add a comment