From Adrienne de Jongh, President of HAE South Africa
Growing up with HAE comes with many challenges, some of which are not easy to talk about. We wanted to open up the conversation during these crucial years to allow youngsters to feel comfortable and united through it all. Additionally, the teen years are essential for taking control of your HAE and establishing our own personal patient care that best works for our individual circumstances.
We at HAE South Africa noticed the gap in conversations happening among HAE youngsters, even though most patients share similar experiences. We set out to create a youngsters’ toolkit to encourage young patients to discuss all challenges they may face with HAE, without feeling any shame or embarrassment. We want to unite our HAE youngsters, so they never grow up feeling alone in this journey.
The youngsters’ toolkit is set to serve as a model for managing and advising young HAE patients through issues which usually are left unspoken, such as dealing with mental health challenges particular focused on body image and confidence, sexual health and wellbeing, as well as social issues pertaining to HAE in the younger years.
We acknowledge the need for increased support and resources for youngsters as they experience extreme physical and emotional changes and challenges throughout their journey to adulthood. Additionally, we have realized the lack of knowledge and advice available to HAE youngsters regarding many of the challenges we hope to address in this toolkit.
The toolkit has successfully been launched at southafrica.haei.org. Thanks to Operations Manager Nevena Tsutsumanova, we have also recently collaborated with HAE International to transform the original toolkit into free online courses with loads of helpful resources, tools and fun activities!
>> You can find the free online course on the HAE Advocacy Academy.
