Stigma and cultural challenges: People with HAE panel discussion
‘Surround yourself with people who believe in you, and that support can make all the difference. You don't need a miracle. You are your miracle.’
For this session, a group of HAE patients and advocates from across the EMEA region gathered on stage to discuss how stigma and cultural barriers can affect the lives of people with HAE, even impacting whether they come forward for diagnosis or treatment.
HAEi Regional Patient Advocates (RPAs), Patricia Karani and Natasa Angjeleska, sat down with Ersan Sevinç from HAE Türkiye, Imad El Aouni from HAE Morocco, Jovana Cvetkovic from HAE Serbia, Yasmine Said from HAE Comoros, and Mona Askar from HAE Saudi Arabia.
The initial question asked about the challenges people with HAE face. Mona highlighted that some doctors dismissed her HAE as allergies. This delayed receiving treatment and increased her fear, especially when an attack left her in the emergency room. One of her family members died from HAE, which made it all the worse. She also raised a topic which was discussed later, that guilt about the disease can affect a person’s life decisions, such as marriage or raising children.
For Jovana, people’s first reaction to HAE is confusion. They don’t understand but want to help, so they offer advice about things like healers, herbal remedies, or prayers. People are not always negative, but a lack of understanding can lead to misunderstandings. In the past, she said her advocacy work had led people to judge her, which she said was painful and unfair.
Ersan echoed the need for people in Türkiye to think about HAE in terms of what is generally understood. He suggested people are open to learn, but words like ‘genetic mutation’ can confuse.
For Yasmin, who spoke throughout in her first language of French, one of the main challenges is the lack of knowledge among physicians, which leads to delayed diagnosis. In her case, the diagnosis took 20 years. She had to educate herself to explain it to doctors. Today, things are better, she said.
Mona echoed these experiences and said that misunderstandings around HAE also delayed proper diagnosis and treatment.
Moving on to tackle stigma directly, Imad was asked if he ever felt judged or blamed for his HAE. His response was to tell the story of another patient. It was her wedding day, and she suffered an attack for no reason. Sadly, the ceremony had to be cancelled. There were 300 guests, and the husband’s family didn’t understand HAE. They accused her of not taking precautions to prevent what they thought was just an allergy. Then there were arguments about future children and the risk of passing the disease on.
Yasmin said she had accepted the stigma that HAE caused for her family. However, she said that they learned to live with it. Yasmin’s husband provided a lot of support, and she ultimately decided not to suffer from HAE but to live with it.
‘It’s not the disease that makes me who I am, but I make the disease what it is.’
Jovana described Serbia as a place where stigma often shows up in healthcare. One patient told her that he had lost friends after his HAE diagnosis, as they thought the condition was contagious. Others experienced a different problem. As the disease is often invisible, people don’t believe HAE patients are really ill; patients are accused of exaggerating or lying, which adds an extra layer of difficulty to living with HAE.
Ersan agreed with this point, especially with work. People don’t understand that you can recover quickly from an attack after taking medication. However, he could appreciate their point of view, as they don’t experience the condition.
Moving on to cultural beliefs, Ersan discussed how both European and Asian cultures influence Türkiye. In some parts of the country, there is more focus on traditional medicine, and also a deep concern about having healthy genes, which can affect marriage prospects and even starting a family.
Likewise, Imad suggested that in Morocco, some people focus on medical science while others seek wisdom in their traditional beliefs. This, he suggested, had meant people only went to see doctors when their traditional medicine had not worked.
Yasmin shared her own experience where she had to try traditional remedies first, as her family wanted to try everything possible before consulting doctors. Ultimately, she said everyone saw that remedies weren’t working and turned to medical treatment. Like other HAE patient advocates, Yasmin said people often shared their own traditional remedies. She occasionally tells people a different explanation for her HAE attacks, such as insect bites or stomach aches; Yasmin knows that isn’t right, but it can feel overwhelming to be explaining the disease to others constantly.
Asked about how openly HAE can be discussed in his community, Imad echoed Yasmin’s viewpoint. Either you take time to explain the whole story, or you invent something like an allergy, as it’s simpler.
In Saudi Arabia, there is little openness to discuss illness, Mona said. This is because illness is seen as a sign of weakness. The same thing happens in Serbia, Jovana said. It can get so bad that people choose not to go to doctors or take medication because of the shame attached to rare diseases like HAE. This can result in tragedy, with one patient dying because they pretended HAE didn’t exist because of the stigma.
Ersan added that in Türkiye, a young man died from HAE while performing his national service in the military. This led to people with HAE being excused from military service. However, Ersan knew of one young man who hid his HAE to serve in the forces and be part of his community. The individual was OK, but it shows how the disease can lead to people feeling excluded.
Imad from Morocco was asked about any ways he addresses stigma and misunderstanding. He stressed the importance of bringing people together to fight isolation.
‘Although people with HAE in Morocco do not have treatment, we do have the power of communication. We can explain HAE to reduce stigma and fight for treatment.’
Ersan reiterated the power of community. For him, being in a community is the first step, as it removes isolation. Don’t isolate yourself, he advised other patients, it makes stigma bigger. Find others who share your experiences. Likewise, Jovana recalled growing up with her HAE being a complete mystery. When she knew there were other people just like her, it was a huge relief.
‘The HAE family helped a lot. I’m not some kind of freak. Just a bit different than anyone else.’
Mona’s experience was to decide to live openly with her disease, as a Saudi Muslim with HAE. She believes that this illness is a test from Allah, and not a source of shame. Mona addresses stigma with knowledge and patience, and with the support of her husband and family, she is encouraged to speak freely without fear.
‘Speak up, don’t let stigma silence you.’
Like Mona, Yasmin also gained the strength to challenge stigma from her family, especially her husband and children. She aims to keep her children from having to go through what she went through. “As strange as it seems,” she said, “HAE is a part of me and has helped shape the person I am today.”
