Patients and caregivers panel discussion

A group of patients and caregivers from across the Asia-Pacific region assembled on stage to give their views and experiences of life with HAE. Our 13 panelists represented 12 countries from across the region:

Leanne from Australia
Ovi from Bangladesh
Mdm Zhang and her husband, Mr Qi, from China
Shashwat from India
Rudy from Indonesia
Makiko from Japan
Alisha from Nepal
Olivia from New Zealand
Krizzia from the Philippines
Yong Hao from Singapore
Soojin from South Korea
Suchi from Thailand

The session covered challenges, changes, and hopes for the future. The first question was: What has been the biggest challenge in managing your HAE, and how did you overcome it?

Rudy from Indonesia spoke first. He said that the availability of medicine is the biggest challenge in his country, as there’s no HAE therapy. He depends on medicine from other countries, such as Singapore, Hong Kong, and Thailand.

Shashwat advised that the biggest challenge is stress, as it is the biggest trigger for his HAE attacks. He had problems as a student as the stress of exams would bring on attacks. Thankfully, he said, his professors and teachers were aware of his disease and knew what to do and what medicine to give.

Alisha, the wife of HAE patient Ganesh (who spoke earlier in the day), was asked about challenging moments as a caregiver. She said the lack of support in Nepal was a real problem and that Ganesh’s condition is managed according to symptoms rather than prophylaxis.

Krizzia was asked what she would want policymakers to understand about life with HAE. She believed that healthcare providers need to know that HAE affects daily life beyond physical symptoms. The uncertainty of attacks can impact mental health, work, and relationships. She would also ask for more awareness and education among healthcare providers, as this would make a big difference in early diagnosis and treatment.

Olivia was asked about her experience as both an HAE patient and the mother of a child with HAE. She felt that because she had personal experience with the condition, she was always trying to ease the way for her children. She does this by leading by example. Her son was with her at the conference to see other people with the condition living and thriving. Reinforcing the message about traveling with HAE, Olivia stressed the importance of organization and planning.

Makiko was asked how she manages to parent a child with HAE. She says that educating teachers is essential for her. She arranges orientation sessions with them to discuss managing attacks and treatment. But her instructions to them is that they call her first, and then they have nothing to worry about because she will act.

Soojin was asked about how she shares her HAE with other people. Responding in her native Korean, Wordly provided a translation to those present: Korean society can make it challenging to be open about a genetic disease; it can be stigmatizing because people may have negative views of genetic illnesses. In the past, she found it hard to tell colleagues or employers as it might have caused work and promotion issues. Now, she tries to spread the word about the disease as much as possible so that many more people understand the disease.

Rudy felt that people were interested whenever he started to tell his story. He tells his story to all sorts of people to inspire them. If there is hope, he believes, anything can happen. Rare disease stories are different and can inspire people, Rudy concluded.

Yong Hao took a break from his HAEi responsibilities to give his perspective from Singapore. Switching to Mandarin, the Wordly translation tells us that Yong Hao initially thought his symptoms might result from an unhealthy lifestyle. However, after his diagnosis, he knew that it had nothing to do with his behavior. Yong Hao stopped blaming himself. The diagnosis also made it easier to share his condition with other people, so he tells new students that he teaches. He said he proactively shares HAE information with everyone rather than waiting for them to ask.

Turning to Mdm Zhang, an HAE patient from China, the question was about the most valuable support she receives. Again, in translation from Mandarin, Mdm Zhang responded that the HAEi conference in Denmark was the first time she didn’t feel alone. Before that, she wasn’t aware of a second person with HAE in China. Now she knows many people around the world have this ‘strange disease.’ And these people were not like patients; they were very happy. Everyone was smiling. She gained strength from this. Now, there is an HAE Organization in China with many members who help and support each other, from the big international family to the small family in China.

Continuing the theme of community, Leanne from Australia spoke about her experiences as a caregiver to her son Levi. She remembers that around his diagnosis, there was little information and advice, but HAE Australia connected her with other mums, which was a real blessing. She recalls that they had so much more advice and insight than any doctor. It gave her peace to know that her son would be OK.

Suchi from Thailand shared this view. She said the patient support community really helped her as a caregiver, sharing information on new treatments and how to deal with challenges, such as convincing policymakers to pay for medication.

Mr Qi was asked to share his experience as a caregiver to his wife (Mdm Zhang). He spoke about the importance of being a good listener and being there for her when she needed to travel to meetings or conferences. In the past, this was harder because of his work, but now that he is retired, it is easier. While working, he remembers difficulties, but ultimately, she was more important to him.

When asked about the advice she would give other caregivers, Alisha said the first thing was to know about the disease. Go to people who understand the condition and learn from them. Then, she felt it was essential to have patience and to be strong as a family.

The topic of conversation moved to barriers to accessing treatment. Even in Australia, not everyone gets access, Fiona remarked. In Singapore, Yong Hao said, the vast majority are still struggling to get the proper treatment or enough treatment, as the disease can be very different, and one medicine does not work for everyone.

Suchi shared her tips on navigating medical systems and advocating for better care. She felt that you must be an educator. Learn about the disease because if you don’t, policymakers will never understand. Working with as many partners as possible is also important, she stressed. You cannot do it alone. You need friends around you.

Shashwat was asked to comment on a time when he advocated for himself in a medical setting. Highlighting that medication is not available everywhere in India, and that there is currently no self-administration, he felt that advocating for yourself meant finding a good doctor with expertise in HAE. Ask them questions about medication upfront. A good doctor can speak for you when you need medicine, perhaps in a different hospital.

Olivia was asked the same question. She felt that the most important thing she’d learned was not to be complacent. You never need permission to advocate for yourself or to question your doctor. She recounted stepping in to advocate for an elderly relative who required extensive dental surgery. Doing so felt awkward, she said, but she worried more about the consequences of saying nothing. Ultimately, her speaking up led to a better outcome.

Krizzia was asked to comment on the impact of a patient organization on her HAE journey. She told the audience they are working on a patient group in the Philippines to build greater awareness, which is the most important job right now.

The HAEi team commended the ongoing work in the Philippines, reminding everyone that advocacy is an ongoing job. It’s never over, they said. Whenever you think it’s over, there will be a new diagnosis or treatment.

Yong Hao felt that being part of a patient group in Singapore meant he was listened to more. The numbers may be small, but when people came together, it created opportunities to join conversations, such as with policymakers.

The changing role of caregivers was discussed next. Makiko, in translation from Japanese, said that over time, with improvements in the treatment environment in Japan and the availability of preventative treatment, her daughter is free from attacks. This has changed how active she has to be as a caregiver.

Likewise, for Leanne, her son Levi is also on prophylactic treatment and has been attack-free for 2 years. At diagnosis, the outlook was grim, but now he can enjoy things like getting excited for Christmas and birthdays, just like normal kids do. I’m grateful for how far we’ve come, she said.

Asked about how Levi’s HAE affected her other children, Leanne said that it was very tricky. The other children would have to spend time with their grandparents whenever there was an attack. Levi’s siblings would see ambulances at school and assume they were for Levi.

Suchi was asked about how she supported patients. She recounted how important it is to speak up and to be proactive and strong in advocating for others. Suchi recalled a situation with a fellow caregiver struggling to get the appropriate care for her son. Suchi called doctors and hospitals to get the proper treatment for the patient.

Mr Qi was asked about how he supported his wife emotionally. He said it is important to understand the situation and try to do more, such as talking to the doctors to reiterate her challenges. He also felt it was important to give her time.

Ovi was asked to look to the future. In Bangladesh, Ovi said, the situation is changing gradually. The hope for the future is that society will better support the underprivileged so that they can have a diagnosis and access to medicine.

For Yong Hao, the future will be positive for his daughter. If she is diagnosed with HAE, she is very likely to have a normal life. Soojin shared this positivity for the future, both for herself and her son.

That message of positivity ended the panel discussion. The HAEi team thanked everyone who participated, reiterating how modern HAE treatment can improve lives and how much they hope this will soon be available to every patient across all the countries present.