Swiss Narcolepsy bulletin n. 8 | November 2024

Message from the Board

Prof. Dr. C Bassetti; Prof. Dr. R Khatami; Prof. Dr. S Miano; Dr. Sigrid von Manitius, Prof. Dr. Alexandre Datta, DR. José Haba-Rubio; 

Dear readers,

With the Fall edition of our newsletter, we would like to remind you about the possibility to apply for a SNaNe institutional membership for your institution on the SNaNe website (find out more about it here: Affiliated Centers – Swiss Narcolepsy Network).

We are happy to announce the confirm of the election of 3 new board members, elected by the SNaNe General Assembly held on 22^nd August, during the SSSSC/SGSSC annual meeting 2024. We organized a SNANE symposium during the SSSC/SGSSC annual meeting 2024, with a successful participations.

This is the composition of the new board:

• President: Prof. Dr. med. Claudio Bassetti
  Dean Faculty of Medicine, University of Bern, Sleep Medicine Unit Inselspital Bern, (second term of office)
• Vice-president and and finances: Prof. Dr. med. Ramin Khatami
  Sleep Medicine Unit, Klinik Barmelweid, (second term of office)
• Education and communication: Prof. Dr. med. Silvia Miano
  Centro del Sonno, Neurozentrum della Svizzera Italiana, Lugano, (second term of office)
• Secretary: Dr. med. Sigrid von Manitius (new)
  Sleep Medicine Unit, Kantonsspital St. Gallen
• Research: PD Dr. med. Alexandre Datta (new)
  Sleep Medicine Unit, University of Basel Children’s Hospital, Basel
• Member at large: PD Dr. med. José Haba-Rubio (new)
  Florimont Sleep Center and Sleep Medicine Unit of the CHUV, Lausanne 

Resign from board:

• Dr. med. Elena Wenz, Sleep Medicine Unit Inselspital Bern
• PD Dr. sc. nat. Esther Werth, Sleep Medicine Unit, Bellevue Medical Group, Zürich

The board is grateful to PD Dr. sc. nat. Esther Werth Dr. med. Elena Wenz for their excellent work and dedication to the SNANE.

The 9^th Swiss Narcolepsy Day, held on October 24 in St. Gallen and locally coordinated by Dr. Sigrid Von Manitius, provided a valuable platform for exploring and discussing various clinical facets of narcolepsy, including conditions related to the narcoleptic spectrum.

For the first time, SNANE also presented the Young Researchers Award. The day concluded with a collaborative talk organized with the Swiss Society of Narcolepsy (SNAG), facilitating meaningful dialogue among professionals, researchers, and patient advocates in narcolepsy care.

Enjoy this newsletter, containing an update about the redcap SNANE database, iSPHYNCS study, an interview from a patient with narcolepsy type 1.

Please, also visit our website, where you can find current and old editions of our newsletter.

Ongoing Research

The Redcap SNaNe Database is growing (more than 240 patients included), most data result from the SPYHNCS study, but direct entering of data in SNaNe database is possible and have been made.

Two new papers have been published, in Journal of Sleep Research, from the ISPHYNCS study and from EU-NN database respectively: one is about the impact of psychiatric comorbidities in Central Disorders of Hypersomnolence, and one is about the impact of gender and BMI.

Patient corner

The point of view of a patient

Male, 25 years old.

How has your view on narcolepsy changed from your diagnosis to today?

When I was first diagnosed, my reaction was to push it all away. I felt embarrassed and judged, convinced that nobody could truly understand what I was going through. I tried to ignore my symptoms, skipping medication and not taking my neurologist visits seriously, assuming they wouldn’t make much of a difference. In school, people would sometimes giggle when I fell asleep in class; I didn’t blame them, but it only reinforced my instinct to downplay or hide my condition. As time passed, my cataplexy symptoms worsened, forcing me to finally confront the reality I’d been avoiding. This wasn’t just affecting me—my family, especially my mom, had to watch me go through episodes without being able to help. Eventually, she began to keep track of whether I took my medication, a shift that made me realize how much my avoidance was impacting the people around me. The more consistently I managed my symptoms, the better I started to feel, and this change helped me see the value in working with my neurologist and being open with the people who wanted to support me. Things really began to shift in my second year of high school when I found a close-knit group of friends I could rely on. They were supportive without making a big deal out of my condition. Around this time, I also started to realize that asking for help didn’t mean giving up independence—it  meant letting people who cared about me contribute to making things easier. High school also brought teachers who nurtured my interest in STEM, which encouraged me to look ahead rather than get caught up in the limitations of my
condition. Their support motivated me to aim for ETH, where I could apply my curiosity in a field I cared about. Now, as I work toward completing my master’s, I can see how much my perspective has changed. Narcolepsy is no
longer something I avoid or feel embarrassed by; instead, it’s just a part of my life that I manage, much like anyone else handles their challenges.

How does self-acceptance play a role in your approach to narcolepsy?

Self-acceptance is key to how I manage narcolepsy and pursue my goals. I learned that pushing people away with the belief that “no one understands” only led to isolation and frustration. I created a tense atmosphere, forcing others to walk on eggshells, which wasn’t helpful for anyone.ver time, I realized that others don’t need to completely understand my condition—just as I can’t fully understand their struggles. If I expect understanding, I also have to be flexible and open to compromise, just like everyone else. Without self-acceptance, it would be easy to fall into a pattern of excuses or blame, but that’s not how I want to live. Accepting narcolepsy as part of my reality allows me to engage with others on equal terms and focus on what I want to achieve.

What keeps you motivated to stay positive and live your life to the fullest?

Being in my master’s program has opened up so many doors, both in computer science and beyond, and that sense of possibility keeps me motivated. I get a lot of energy from projects where I can apply what I’ve learned and see real progress. Sometimes, I wish I could split myself into multiple people to pursue all the interests and ideas that come to mind. It’s exciting to finally see my skills come together, knowing I have the knowledge to create and explore in a field I’m passionate about. The range of paths ahead keeps me curious and looking forward to whatever’s next.

How has the support from your neurologist influenced your approach to life with narcolepsy?

The relationship I’ve built with my neurologist has been essential in managing narcolepsy effectively. It took me some time to realize that being open and honest about my symptoms, lifestyle, and challenges was key to building the trust needed to make real progress. Instead of looking for quick fixes, I’ve
learned to listen to their guidance and understand the reasoning behind each
suggestion.
I think some people might view a neurologist as someone who just prescribes medication or gives generic advice. But I’ve found that sharing specific details about my daily life and the adjustments I’ve tried—what’s worked and what hasn’t—has allowed my neurologist to tailor their recommendations much more closely to my needs. There’s a real difference between simply “following orders” and actively collaborating to manage the condition.

Upcoming Events

SNaNe Clinical Case Discussion
Webinar 22 | 02.12.2024

Join the next SNaNe Clinical Case Discussion on 2^nd December 2024!

Participation is free of charge and open to public.

Don't miss the chance to submit and present your clinical case for the upcoming webinar.

9^th Sleep Medicine School

Venue: 
University of Cyprus - Medical School
Nicosia (Cyprus)

Local Organizers:
Prof. Panagiotis Bargiotas
Prof. Georgios Hadjigeorgiou

Course Directors:

Prof. Dr. med. Mauro Manconi
Prof. Dr. med. Claudio Bassetti

Swiss Narcolepsy Database - Institutional Membership of the SNaNe

The SNaNe plans to launch a national Swiss database on narcolepsy. The basic idea is to run a scientific database and prospectively collect data on narcolepsy and related disorders of hypersomnolences. The SNaNe database is designed as a long-term project to integrate clinical and preclinical data, including sleep studies and biosamples (blood and cerebrospinal fluid) at inclusion and at regular follow-up visits. The SNaNe database is implemented as a web-application using the Redcap data platform. The SNaNe invites Swiss sleep centers who are experienced with clinical care of narcolepsy and other patients with hypersomnolences to join the database as institutional member. The institutional members must follow Good Clinical Practice “GCP-guidelines”.

Institutions Login information will be provided upon application for institutional members.

Only SNaNe institutional members will have access to data of their own study site.

Did you know?

Narcolepsy affects 1 in 2,000 people, causing sudden sleep attacks and daytime drowsiness. Early diagnosis greatly improves life quality!

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