Our organisation would like to wish the best of luck, lots of friends and good grades to all HAE juniors for the new school year 2023/2024! Because HAE awareness in the school environment is especially significant, as every year, we want to offer parents, relatives or guardians helpful educational materials as well as recommendations on how to get through a school year with good health and, ideally, without many missed classes.
The story of ‘The Rare Boy and the Talkative Little Balloon’ is helping raise HAE awareness
Talking openly about a rare disease like HAE is challenging for adults, let alone children. One way to communicate about such uncomfortable topics is through art and stories. A great example is the short story „The Rare Boy and the Little Talkative Balloon“ by author Natasa Angjeleska, the regional HAE patient advocate from North Macedonia. The story depicts the adventures of a little boy on his birthday as he experiences a party, an emergency trip to the hospital and an unexpected encounter with a talking balloon. Initial disappointment and sadness are followed by a positive experience of new friendship and mutual understanding.
The Czech translation of the story is available for download here or we can send by post a printed booklet on request. We would appreciate it if you could help us distribute the story to the schools or kindergartens!
We’re gonna make it through the school year again!
School classes as well as after-school clubs, sports activities and trips can cause more stress to young HAE patients than to healthy schoolchildren. The parent’s task is therefore to minimise the impact of the disease via prevention, education of the school staff, but also instructing the children themselves.
- prevention and communication are essential – inform both teachers and other school staff about your child’s diagnosis, its symptoms and the necessary steps if they occur,
- use some of our templates and documents (in Czech) – in our online Infocentre, section HAE and school, you will find a sample letter and a draft statement of cooperation to help parents communicate with school management to discuss special needs etc.,
- download the leaflets HAE and School or Living with HAE (in Czech) – they contain important recommendations for teachers and parents on teaching, attending children’s camps, communication, the impact of the illness etc. You can print or download the leaflets and distribute them to teachers.
- consider an individual education plan – we advise you to try and discuss an individual study plan with the school, especially if your child is in the final year and has to take many exams or is currently suffering from frequent HAE attacks,
- who is prepared, isn’t surprised – when getting ready for a school trip, don’t forget to pack all the necessary medicine and give instructions on their use to the child and school staff,
- Cheer up! – always remember to keep motivating your children regularly, praise them for their achievements and encourage them to tackle their studies and clubs!
We wish all HAE juniors and their parents good health, enough energy and enthusiasm necessary for the new school year 2023/2024!
