Aug 10 2023
First Sleep Symposium in Sri Lanka

Written by Cara Weaver
Information by Anne Samarawickrama

Assessing the Need in Sri Lanka

Anne and Prasanna Samarawickrama have always wanted to bring awareness and education about Narcolepsy to those affected in Sri Lanka. Narcolepsy is a lifelong disorder of the central nervous system, characterized by the brain’s inability to control sleep-wake cycles. Currently, both Anne and Prasanna are board members of Wake Up Narcolepsy (WUN), a US-based 501(c)(3) nonprofit organization dedicated to driving Narcolepsy awareness, education and research towards improved treatments and a cure.

Sri Lanka has a population of about 22 million people. Currently, there is little data on how many people there are diagnosed with Narcolepsy. In the United States, Narcolepsy is relatively rare, estimated to affect 1 in 2,000 people. Assuming similar occurrences to the US, Sri Lanka may have at least 11,000 people living with Narcolepsy.

Unfortunately, Narcolepsy is misunderstood, underdiagnosed or misdiagnosed in most countries. Narcolepsy has several major symptoms including excessive daytime sleepiness (EDS), disrupted nighttime sleep, cataplexy (loss of muscle tone), sleep paralysis and sleep related hallucinations. Lesser known symptoms include brain fog and microsleeps.

Beginning the Collaboration 

Earlier this year, Prasanna had a chance to reconnect with two high school friends, Dr. Amitha Fernando, a senior consultant pulmonologist, and Dr. Bimsara Senanayaka, a senior consultant neurologist. Both are experts with many medical publications in their respective fields.

Prasanna introduced Dr. Senanayake to Dr. Emmanual Mignot, the director of the Stanford Research Center for Narcolepsy. The two doctors had pre-planned meetings at the American Academy of Neurology Annual Meeting in Boston, Massachusetts, in early April of 2023, and were able to use that time to plan a collaboration.

The Symposium

After his return to Sri Lanka, Dr Bimsara Senanayake collaborated with experts including neurologists, pulmonologists, neurophysiologists and geneticists to organize the inaugural symposium. His main focus was to fill the gap in healthcare in terms of sleep medicine and treatment options.

The collaboration resulted in the Inaugural Symposium on Sleep Neurology, which took place on July 12th, 2023, at the National Hospital of Sri Lanka (NHSL), a 3400-bed hospital with affiliation to the University of Colombo. The symposium was attended by around 100 delegates.

The virtual speakers included Dr. Sudath Gunasekera (neurophysiologist) and Professor Mathew Walker (neurologist), both from the United Kingdom, followed by Dr. Mignot, presenting from his home in France.

When asked about the event, Anne said “Information is power. The six sleep experts and researchers who spoke provided awareness and education to the well-attended forum. The symposium focused on complicated sleep issues, patient cases, diagnostic tools, medication options, genetics and current research. This inaugural symposium and the knowledge it provided will help to diagnose patients faster and help to improve their daily lives.”

In the included below photo, from left to right: Dr. Kamal, Dr. Amitha Fernando (moderator), Dr. Arjuna Fernando (moderator), Dr. Bimsara Senanayake (moderator), Prasanna Samarawickrama, Dr. Shania Gunasekera (neurologist, in-person speaker), Dr. Kawmadi Gunawardena (geneticist, in-person speaker), Anne Samarawickrama and Dr. Ruwanthi Jayasekera (pulmonologist, in-person speaker).

Dr. Mignot’s Thoughts

Dr. Mignot had visited Sri Lanka when he was 19 years old for three weeks and had traveled around the island extensively. “I was delighted to talk about narcolepsy [virtually] in Sri Lanka, where I found a lot of excellent physicians eager to learn more,” commented Dr. Mignot,

“In this part of the world, I fear 90% of narcoleptic patients are undiagnosed and, even when diagnosed they may not have access to treatments, which is a tragedy. We need to do more to remedy this situation.” Dr. Mignot hopes to visit Sri Lanka again soon for further collaboration.

Moving Forward

Currently, there is a general sleep disorders website  [1] developed by the Sleep Assembly of the Sri Lanka College of Pulmonologists. The website is a product of Dr. Amitha Fernando and is in partnership with the Association of Sri Lankan Neurologists and available in Sinhala, Tamil and English. According to the Northwestern School of Law Library, in Sri Lanka, 87% of the population speak Sinhala, and 28.5% speak Tamil, which are the two national languages. English is spoken by 23.8% of the population [2]. Those who seek a diagnosis for various sleep-related symptoms are able to be tested at the NHSL and other sleep clinics around the country. 

Hopes for the future include repeat of the symposiums, working with medical students to translate awareness and education resources. Anne says that plans are in the works to create a website focused on Narcolepsy and Hypersomnia using the PHS survey created by Dr. Kiran Maski. The instructions for the PHS survey can be found here. The research for the PHS was partially funded by Wake Up Narcolepsy. 

Learn More

For more about Narcolepsy and resources on diagnosis and spreading awareness, check out the rest of our website or contact us at info@wakeupnarcolepsy.org

We can also be found on Instagram, Twitter, Facebook, Threads and YouTube. 

Sources

[1] – General Sleep Disorders Website

[2] – Northwestern Pritzker School of Law