Make a difference – driving change worldwide – translating HAEi guides and booklets

After a short dance break led by Michal Rutkowski, the audience was re-energized for the last sessions before lunch. First among these was a discussion of the value of having native-language patient information materials. HAEi RPA Yong Hao Lim discussed the topic with Konstantin Tzvetkov from HAE Bulgaria, Helene Saam from HAE Switzerland, and Nan Zhang from HAE China.

Yong Hao started by asking about the difference having patient information in local languages makes, especially in countries like Switzerland where multiple languages are spoken.

Helene agreed that because of the multiple languages spoken in Switzerland, not everyone speaks English well. That makes it important that medical information is available in multiple languages so patients can better understand their illness. She said that many patients tell her that brochures, such as the HAEi booklet Women with HAE, really help them explain their illness to family members, employers, and teachers. Nan Zhang, whom Yong Hao respectfully referred to as Madam Zhang, agreed, saying that addressing the specific needs of women with HAE is important in China, and that they are grateful to have the booklet in translation.

For Konstantin, the benefit is especially strong in the emergency room. When diagnosis and treatment need to be quick and efficient, having all the information readily available creates a kind of bridge. He told the audience that information about HAE makes up such a small part of a doctor’s medical knowledge, and bringing materials in the native language really helps a lot. Helene concurred with this, even outside of the emergency situation. She felt that, as consultation times can be short and there is little time to explain, doctors like the organization’s booklets and hand them out to newly diagnosed patients. That way, she said, people can read through everything at home, and it also improves communication between doctor and patient.

Madam Zhang explained that having HAE information in Mandarin means they can post on Chinese social media channels such as WeChat and Douyin, as these are the channels people rely on for information.

In terms of the impact of translated materials, Helene suggested that they give patients more confidence, as they better understand their condition. The ability to explain their condition in plain language was a benefit for Bulgarian patients, according to Konstantin.

In the future, Madam Zhang wanted to address the stigma often surrounding rare diseases like HAE. She suggested that there is blame attached to the mothers of children with HAE, and that this should not be the case. She hoped for a resource that encourages people with HAE not to feel different from others; with medicine, they are just like everyone else.

Finally, Konstantin made it clear that, for him, the purest need for translated materials is in smaller countries whose language not many others speak. He said Bulgarian is rarely spoken outside their country, and that through HAEi, they can have great information on HAE freely available in their language.

‘Thanks to HAEi’s translated materials, even with 100 different languages, we can all understand each other.’

– Konstantin Tzvetkov, HAE Bulgaria