WND 2021 Live Panel: Narcolepsy Around the World

Australia: Brad

Dr. Brad McKay is a family doctor in Sydney, Australia, with a special focus on providing healthcare for the LGBTQI+ community. He also works in the media and presents health segments for TV, radio, and podcasts across the country.

Brad notes that Australian physicians largely prescribe stimulants and antidepressants for narcolepsy, as other medications are not available there. Even his own patients struggle to get a narcolepsy diagnosis due to difficulties in finding a specialist educated in a sleep framework.

He recently published a medical myth busting book called Fake Medicine, into which he has woven the story of his own journey to narcolepsy diagnosis.

I went through a 10-year period of trying to find a diagnosis, trying different treatment measures, and not getting anywhere. I was going through medical school, then qualified as a doctor, then working as an intern, and then as a resident, and all this time we weren’t really taught about sleep medicine at all.”

– Dr. Brad McKay

China: David

David Ma is a teacher living in Shanghai, China. He loves basketball and is proud of his Christian faith. David was diagnosed with narcolepsy in 2007 at the age of 14.

David struggled with sleepiness for four years before seeking help at Peking Union Medical College Hospital in the summer of 2007. David’s parents did not want him to disclose his narcolepsy to teachers or peers because they worried that we would be bullied. He says, “My parents love me, but they don’t know how to face this illness, so we don’t talk about narcolepsy in my family.”

In university, David found friends who accepted him, and he was happy to be able to tell them the truth about his narcolepsy. He started going to church, which brought him peace. Now, David shares his story and hopes for a better quality of life for children with narcolepsy.

I’m still a patient, but now my life is full of colorful dreams, and I have hope.”

– David Ma

Germany: Antje

Antje Voutta lives in Darmstadt, Germany where she is a part time freelance university lecturer, non-fiction author, musician, and mother of two boys. She was diagnosed with narcolepsy at the age of 18, after experiencing symptoms for a year. 

As a student, some teachers believed Antje’s diagnosis and some dismissed it. Early in her journey, Antje started going to meetings of a self-help organization for youth with narcolepsy in Germany, and later began leading a self-help group in Darmstadt.

Antje travels three hours by train to see her doctor, as he is one of the few narcolepsy experts in the country. However, she says public awareness of narcolepsy has increased in Germany since she was diagnosed, which she is happy to see.

We have the same disease and we’re all so different, which is why I think it’s so important to share experiences. We are the experts, and we can help each other.”

– Antje Voutta

Poland: Agata

Agata Zadora is an engineer and mother of a three-year-old daughter living in Wroclaw, Poland. Her symptoms started when she was 19 years old, but it was still several years before she received a type 2 narcolepsy diagnosis.

Agata’s tiredness started in high school. She saw multiple specialists over the years who dismissed her concerns and could offer no explanation for her excessive sleepiness. Years later, she found Project Sleep online and watched videos of narcolepsy advocates sharing their stories, which helped her realize she could have narcolepsy. She also connected with other young Polish women experiencing similar symptoms, and they continue to provide each other information and support.

Now that I know why I’m so tired, I am living. I’m a happy person.”

– Agata Zadora

Brazil: Juliana

Juliana Angelim Neves is a lawyer from Bahia, Brazil, who loves dogs, music, movies, and reading. She was diagnosed with narcolepsy at age 24.

Juliana experienced a wide range of symptoms, from vivid nightmares as a child, to disrupted nighttime sleep and hallucinations as a teenager and young adult. Juliana’s mom, who also has a narcolepsy diagnosis, recognized some of the symptoms, and took her daughter to a neurologist in Sao Paolo.

Juliana says, “I have support, but that’s not true for the majority of Brazilian people with narcolepsy.” In Sao Paulo there is a big center for narcolepsy that offers treatment and medication, but in other parts of Brazil there is no public support. Some people have to spend more than $1,000 to get a diagnosis and cannot afford medication.

Juliana is the first person from Brazil to become a trained speaker with Project Sleep’s Rising Voices program, sharing her story with Portuguese-speaking audiences. She also works with ABRANHI, a Brazilian narcolepsy patient organization which has partnerships with several house bills, as currently the Brazilian government does not provide any assistance or protection for people with narcolepsy.

It’s rare to find a doctor in Brazil who knows what narcolepsy is, so we are trying to make it better step-by-step.”

– Juliana Angelim Neves

Angola: Iris

Iris Vasconcelos is an avid advocate for invisible illnesses, freelance writer, and blogger living in Angola. She was diagnosed with narcolepsy at 28 years old, after experiencing symptoms for 13 years. 

When she was 24, Iris moved from the UK to Angola to live with her sisters. When she arrived in Angola, her symptoms immediately became more severe. There was no way for Iris to get a sleep study in Angola, so she flew to Portugal, where her mom lives. She was able to pay privately to see a sleep specialist and was diagnosed with narcolepsy soon after.

Narcolepsy medications are currently not available in Angola, so Iris’s mom picks up the prescription in Portugal and sends it to her. Iris says the Angolan postal service is not reliable, which is an additional challenge in managing her care.

I didn’t realize it when I moved there, but now I know that the heat in Angola makes my symptoms so much worse.”

– Iris Vasconcelos

Israel: Dana

Dana Harel lives in Israel with her husband and two children. She is a developmental psychologist and an artist. Dana’s symptoms started when she was about 18 years old, and she was diagnosed with type 1 narcolepsy with cataplexy at age 34.

Dana says that in Israel, narcolepsy is very rarely diagnosed, and even neurologists have hardly heard of it. There are very few sleep doctors and no narcolepsy specialists in the country. Only one medication is currently approved for narcolepsy in Israel, but she receives additional medication via international delivery.

There are misperceptions about narcolepsy here — others sometimes think my symptoms shouldn’t be a problem because I take medication, or that my extreme sleepiness is the same as general tiredness.”

– Dana Harel

Narcolepsy Around the World: Listen or Watch!

World Narcolepsy Day is dedicated to raising awareness of narcolepsy on a global scale. Established by 24 patient advocacy organizations across 6 continents in 2019, World Narcolepsy Day unites the international narcolepsy community to inspire action, increase public knowledge, and elevate the voices of the 3 million people living with narcolepsy worldwide. Together, we can reduce delays in narcolepsy diagnosis, reduce stigma and improve outcomes. Get involved and use the hashtag #WorldNarcolepsyDay.

This broadcast originally aired on September 22, 2021.