Natasa Angjeleska, HAEi Regional Patient Advocate
“We tell ourselves stories in order to live.” American writer Joan Didion may not have had a rare disease in mind when she wrote this memorable line. Still, according to HAEi’s Natasa Angjeleska, stories are vital for children with HAE.
As part of the hae day :-) 2025 celebrations, Natasa Angjeleska launched her third book for children with HAE, all of which are available from the HAEi Youngsters’ website. As a published author, Natasa is well-qualified to talk about the importance of stories. But when her experiences as an HAEi Regional Patient Advocate, mother of a boy with HAE, and an experienced educator are combined, she is uniquely equipped to explain how to help young people come to terms with their HAE.
Speaking to Natasa, it is clear that despite her many qualifications, the inspiration to write books for children with HAE came first and foremost from her son, who lives with the condition. She remembers very severe and frequent HAE attacks that prevented him enjoying a carefree childhood. In particular, she told us, “When my son was six years old, we had to leave a birthday party suddenly because he developed an HAE attack and urgently needed medication. The trigger for the attack was not illness or injury, but joy, the excitement of being with friends and seeing his grandparents. I felt devastated as a parent.” But from this unhappy incident, Natasa saw something powerful.
‘What struck me was my son’s remarkable courage and determination. He refused to let HAE define him. This motivated me to write. I wanted to create stories in which children with HAE could recognize themselves—not only in the struggle, but in the strength, bravery, and hope that coexist with it.’
– Natasa Angjeleska, HAEi
The result was her first book, The Rare Boy and the Talkative Balloon. Now available in 12 languages, Natasa admits that seeing her story translated was incredibly emotional, as it showed the story resonated beyond her own experience. Since then, two further books have followed: Happiness and The Rare Boy on a Race.
The books blend everyday life with HAE to help give meaning and context to the experiences children face. This can mean everyday obstacles such as disruptions to routine, fear of hospitals, and anxiety around medical procedures such as injections. For Natasa, this means that books like hers create a safe, natural opportunity for children and caregivers to have open conversations about health, fear, and coping. She suggests that when children see characters who resemble them or face similar challenges, they feel seen, validated, and less alone. For children living with rare diseases, this representation can be particularly powerful, helping to counter feelings of isolation, shame, or stigma.
‘When stories place emphasis on children’s strength, resilience, and courage, they shift the narrative away from illness alone and toward empowerment and hope.’
– Natasa Angjeleska, HAEi
Books about diverse characters, such as those with rare diseases like HAE, benefit all children, as Natasa explains, “Exposure to stories about peers with different experiences encourages empathy and understanding and helps children appreciate and respect diversity.” Natasa encourages everyone in the community to use storytelling to support children and normalize differences. As Natasa says, “By doing so, we can help ensure that children do not feel isolated, ashamed, or stigmatized because of their condition, but instead feel understood, empowered, and valued.”
What to say when talking to young people about HAE
We asked Natasa for her advice on overcoming the challenges of explaining HAE to young people. She told us that talking about HAE is not a one-time conversation. It is a process that grows with the child, supporting understanding, emotional well-being, and confidence over time. As children grow, Natasa suggested, explanations should evolve—from reassurance and simplicity toward empowerment, autonomy, and shared decision-making.
Here we share some of Natasa’s recommendations for different age groups:
Infants and very young children
At this age, children experience the world in concrete and emotional terms, so explanations should focus on reassurance and safety rather than medical detail. For a child over the age of three, it is often enough to explain that sometimes their body becomes swollen on the inside, which can hurt, and that adults and doctors know how to help. At this age, children may believe they have caused what is happening to them, so it is important to repeat clearly and often that HAE is not their fault and that they are safe and cared for.
School-age children
As children reach early school age, they begin to understand simple cause-and-effect relationships and may notice differences between themselves and their peers. Introducing the name of the condition can help reduce confusion and fear, as long as explanations remain concrete and straightforward. Parents can explain that HAE is something their body does sometimes, and that medicine helps stop the swelling. Children at this age benefit from knowing what to do if they start to feel unwell, such as telling a trusted adult at school, and from hearing that it is normal to feel worried or upset at times.
During middle childhood, children are better able to understand how their bodies work and may want more detailed explanations. This is an appropriate time to explain that HAE is something they were born with and that certain things, such as stress or tiredness, can sometimes trigger symptoms. Involving children in recognizing early signs and participating in routines related to their care can increase their sense of control and confidence. Emotional reactions such as frustration or anger are common at this stage and should be acknowledged and taken seriously.
Teenagers and young adults
Adolescence brings a growing ability to think abstractly and a strong need for independence and identity formation. Teenagers can understand that HAE is a rare genetic condition and may have questions about the future, relationships, and autonomy. Open and honest conversations, combined with respect for their growing independence, help adolescents integrate HAE into their lives without allowing it to define who they are. Encouraging shared decision-making and discussing emotional well-being alongside medical management supports both adherence and psychological resilience.
Tips on talking about HAE
In addition to tailoring information to the age of the child, Natasa shares five tips on communicating with all young people:
- Children first need emotional safety before they can process medical information
- Explanations should always be honest but age-appropriate, avoiding frightening language or unnecessary detail
- Children need reassurance that HAE is not their fault and that they are not alone in managing it
- Listening is just as important as explaining; young people should feel free to ask questions, express fear, or show frustration without feeling corrected or minimized
- Advocacy and patient organizations can support families by using clear, accessible language that addresses both the medical and emotional aspects of living with HAE, emphasizing preparedness, resilience, and hope. Involving children in peer-group support, such as HAEi Youngsters’ Community, can reassure young patients and caregivers by providing a space to share challenges and experiences.
A crucial element of HAE communication is to avoid defining someone by their illness, especially a child, according to Natasa. Although HAE may be part of a child’s life, it should never become their identity, she cautions. Good communication should highlight strengths, coping, and everyday moments of joy alongside the challenges. This means acknowledging fear, pain, or disappointment, while also showing that these experiences can be managed, which will help children build confidence and resilience.
Natasa’s parting comment is for all children with HAE, from 3 to 93:
‘Children need to see that courage does not mean the absence of fear, but the ability to continue despite it.’
– Natasa Angjeleska, HAEi