The Hereditary Angioedema Association of South African (HAE SA) is calling on fitness fanatics and step-goal enthusiasts to join the people with the rare disease in the Walk Around the World for Global Awareness event on May 16.
Janice Strydom of Morehill and chairperson of HAE SA was diagnosed with the disease in 1992.
It came after struggling for many years with what was initially thought to be reoccurring allergic reactions.
“I am excited to be part of the global HAE activity,” she said.
“By coming together, we put the spotlight on HAE and strengthen our voice to call for improved diagnosis times, as well as consistent access to lifesaving therapies for everyone.”
She said there are 104 patients in South Africa but fears many are suffering unnecessarily because they remain undiagnosed.
“With an incidence rate of one out of 50 000, we know there are many more HAE patients, and we are committed to locating them,” she said.
“We do not want to see anyone losing their life because they are unable to access the care they need.”
To participate in this year’s HAE challenge, members of the public are urged to sign up at www.haeday.org
The activity challenge starts in early April and runs through to the end of May.
Everyone is encouraged to participate in all types of physical activities that promote healthy well-being.
Make your efforts count by logging your progress daily on the website.
The activities will be converted into steps to document how many times participants ‘walked around the world’.
For more information regarding HAE SA email Janice at haeadvocacysa@gmail.com
Facts about HAE:
• It is characterised by recurrent, painful episodes of swelling of the skin or mucous membranes.
• This results in swelling of various body parts, including the hands, feet, face, abdomen (gastrointestinal tract) and throat.
• Swelling in the throat can be fatal as the airway can become constricted which could lead to death by choking.
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