Doctors Living with Narcolepsy

These three doctors are all living with narcolepsy, a chronic neurological condition that is often misunderstood by the public and the media. From diagnosis and treatment to med school and practicing medicine, these amazing individuals open up about their experiences wearing the hats of both physician and patient.
We had a LOT of questions for our doctors with narcolepsy, and we're so grateful for their candid responses and inspiring reflections on:
- Becoming a doctor: diagnosis, med school, and turning points
- Being a doctor: management tips, sharing their diagnosis with co-workers and patients
- Raising awareness of narcolepsy, sleep disorders and sleep health
- Being a doctor during COVID-19
- Advice for future doctors with narcolepsy
This video features:
- Marleny Macario, MD
- Lindsay McCullough, MD
- Luis E. Ortiz, MD
ABOUT THIS VIDEO SERIES: This is Part I of a series of three videos featuring healthcare professionals living with narcolepsy created by Project Sleep. During the unprecedented global pandemic of 2020, Project Sleep is proud to highlight the stories of healthcare heroes who are also living with narcolepsy, a chronic and often invisible neurological condition impacting 1 in 2,000 people worldwide.
Watch Part II: Nurses with Narcolepsy: • Nurses Living with Nar...
Subscribe to our channel and stay tuned for Part III coming soon!
ABOUT PROJECT SLEEP: Project Sleep is a 501(c)(3) non-profit organization raising awareness about and advocating for sleep health and sleep conditions. Learn more: project-sleep.com/.
Published: August 14, 2020

[@justlivingwithit]

Im in school for rt and 90% sure i have narcolepsy. Ive suspected it for 8 years. my professors and students have im sure percieved me as lazy, but i cant control it. I have cataplexy daily, from clinical rotations to lectures. So its nice to hear people in the medical professionals are successful that also have it

[@manoverbored7403]

I have to assume these folks have a less extreme case than I do or have gotten very lucky. I've been fired from almost every job I had because managers or co-workers would notice my lapses of consciousness and then I would have to divulge my secret and would be terminated shortly thereafter. I tried very hard to do well in life but long hours are needed to do well and I would always eventually fall short. So, kudos to these folks. I'm just happy I didn't kill myself.

[@gaylesanchez7216]

Hi everyone . Thank you for these video . I’m so happy to view these . I’m also a doctor with narcolepsy with cataplexy . I first had my symptoms when I was 14 . It was a really struggle then. I made my way through medicine with the help of provigil. Residency in pediatrics was a struggle . Telling my diagnosis to my co residents made them understand me easier . Right now, I am a pediatric consultant in a government hospital here in the Philippines . I have 2 beautiful children and a loving husband who understands my condition . I thank Him for helping me making it through my condition . I can do my job now just by taking my coffee break and y afternoon nap.

[@athenastrother7359]

The baggage is real. Thank you for this video. While studying for STEP1 I applied for accommodations and as I was writing out my request I started to broadcast my thoughts and believe that the committee reading this would judge and doubt my ability to be a doctor. But, I just finished my surgery rotation full of 12-14h days and 26h call shifts and I am so proud. It's been a struggle, but I still thrived and proved to myself that I actually can do this.

[@JesHinton]

That baggage that he talks about is so true! I’ve had symptoms for narcolepsy since I was 11 but didn’t get diagnosed until I was 17. And with my life being super out of control within those years has caused me to develop an eating disorder to feel more in control of my life from 17-22 yrs old! And these last few months I’ve gotten help from a great therapist and dietician that both specialize in eating disorders. I wish I could give old me a hug and I wish I didn’t blame myself for what happened in my life. I used to think “if I didn’t have narcolepsy I could’ve been really successful” because I was super ambitious and was always in advanced classes! But my life didn’t go as planned and I ended up graduating high school with a 2.8 gpa with no special medals or tassels. But I have this life and realized I can’t change the past for what’s happened to me so why sabotage my future? I now know what I want to do with my life! I want to major in public and community health and possibly become a psychiatric physician assistant! So Im happy I found this video from looking up med students and doctors with narcolepsy! Thanks so much for this video it means a lot!

[@sjgeneralcontractors2137]

You Can Do It! Find a routine, study between classes and take small naps when the opportunity presents itself. If you can find a classmate that you can confide in that takes great notes it will help tremendously. In my day a tape recorder was my best friend, today the Internet is available so you will succeed!

[@safehavenyogameditation1967]

Thank you! This lifted me up & I appreciate the vunerability.

[@Project-sleep]

Thank you for watching and commenting. This means so much to us.

[@melissaflygare2980]

Bravo! This is an excellent video. We all head into our careers hoping to be the top achiever and hiding our imperfections. Isn’t it so freeing so let people know who we really are and what we need? Three cheers for an authentic life!

[@Project-sleep]

What a meaningful comment, thank you, Melissa!

[@babyromance19]

Truly impacting video! I'm so unbelievably grateful to you guys for sharing your stories and to Project Sleep for being your microphone! I have always wondered if there even existed doctors with narcolepsy so it's so great to know that there are and that its possible. The journey alone to becoming a doctor is demanding in itself, let alone all the subsequent work you do. I was genuinely inspired by your stories because it makes me feel like I can actually do anything! Sometimes we place limits on ourselves simply because we tell ourselves we won't be able to do it...but in reality it's narcolepsy that's limiting us. We are limiting ourselves. Thank you so much for sharing your experience! ❤👏

[@Project-sleep]

Thank you for watching this video and leaving such a thoughtful comment, Iris! We love sharing people's stories and cannot wait to highlight yours via your Rising Voices efforts soon too!

[@babyromance19]

@@Project-sleep Thank you! But really it's my pleasure! Raising awareness is so important to me and I appreciate and applaud everyone who shares their story solely to help our community. I know exactly how scary it can be! 😅

[@neilsoulman]

@@babyromance19 Yes it is scary, thanks again for your testimonial

[@mariasampaioazevedo3253]

I'm Maria, from Brasil, ICU specialist type 1 narcolepsy. Hello guys!

[@ImranKaBharat]

Hello 👋 I AM FROM India. I am a student And have diagnosed with Narcolepsy with Cataplexy.

[@njerikimemia8692]

Thank you for this video and being vulnerable and creating awareness!

[@vintuitive7627]

That’s fantastic that these doctors actually are able to use their own experiences to help others with similar problems!

[@ianohtheentertainer5868]

I have had this symptoms for like 5 years now. People in my country don't even know about it. It's hard . You try to hide it untill it embarrasses you .....it's not easy, when people judge you when deep down you know you can't control this. I struggle accepting it to be honest. I won't deny the fact that it is a neurological disorder but believe me or not it is also spiritual. I am a seer, I can see the spiritual realm, and sometimes when the knowledge of freedom I received from Jesus grows in me it sometimes goes away not by fighting it but by believing that you are set free. Mind you I don't judge those of you who are not spiritual. Either way remain positive, don't be hard on yourself, stay strong, we shall overcome.....

[@sarahquinn1833]

This has given me so much hope. Thank you for sharing your story. ❤

[@iskoldperkermainuhuh]

This is great! I am a Nursing student getting diagnosed at this moment

[@larryjohnson2306]

That's awesome, I would have never thought someone with narcolepsy could succeed as a medical doctor. And I too had a misconception about basically what narcolepsy is until now.

[@corielake828]

I have has narcolepsy for 20 yrs. and have been a nurse for 11 yrs. Traditional nursing jobs do not allow for naps. I tell no one about my diagnosis for fear of lack of understanding and dismissal.

[@sherrisolomon2843]

Do you take them on your lunch brake?

[@miriamhalliday2801]

I take dexamfetamines prescribed by a sleep disorder doctor. They have help me to live a 'normal' life in every thing...

[@sumaoommen]

thank you for this excellent video which gives hope to so many..!!

[@anthonyhoward7764]

I want to finish college & go to school to become a orthodontist but narcolepsy takes advantage of me😩

[@nirmaladrieskens4338]

Thanks for sharing your story ❤️❤️❤️🥰🥰🥰

[@ozzypresident]

Im a Narco and yeah just live and do what ever you want dont let it hold you back

[@narcolepsywarrior]

I LOVE this Julie! As always, forme, it's so healthy to hear real-life stories because they help reduce the feelings of "suffering in silence". However, it's even more powerful to be reminded that a narcolepsy diagnosis isn't the end of a productive, inspiring life, it can be the beginning.

[@user-fh1mf1gd1t]

It can be the end though too.

[@stellaancimer8505]

So grateful to see this, i cant wait to Have offical diagnose. I Have cataplexy

[@jitinverma3382]

May you be blessed with good health

[@LDOPAdecarboxylase]

MS1 w/ narcolepsy-1…it’s tough out here keeping up w/ the grueling workload.

[@driveramd12]

Hi, I’m a physician recently diagnosed, i really need to talk to a peer with Narcolepsy…. Very important

[@iwatchkittenvids45]

So there's hope!

[@angel1111.]

i have done the mslt test and have narcolepsy but no doctors in my area are knowledgeable who do i need to see

[@norah4077]

Did any one els have a baby ? Never got a chance to see real experience about taking the treatment during pregnancy. I only read about it .

[@ladybird2842]

How can I manage it !

[@angel1111.]

modfinal

[@kristialbright8104]

Any other pharmacists out there?

[@jameslong9478]

Yes!

[@kristialbright8104]

@@jameslong9478 I'm not the only one!

[@larryjohnson2306]

Salute to you for succeeding against the odds.

[@monaiannucci7831]

Sleepy hollow?

[@cutfba8650]

I had narcolepsy in 2011-2013. I took some treatment in 2013 and I got completely cured. From 2013-2020 I could have normal life...I studied and I worked. In 2019 I worked as civil servant. I had no narcolepsy. In 2021, I have this again. I'm so sad...but I tell myself, it was cured before....I believe one day it can be cured too. It's just for now I can't go to another city or another country to get the treatment again cos I'm working hard as civil servant and still hiding this from people. I'm not ready to tell people about this...I don't know how to explain...I don't know how to make them believe me.

[@driveramd12]

I understand what you are saying, study Narcolepsy. Of it is truly narcolepsy, it is the destruction of some special Neurochemical in the brain that causes the condition, the only way to cure it would be to restore the cells, and that is under research. Meanwhile “ cure” is not achievable. Something I learned in medicine is “ never say never”. A wise person considers both possibilities and plan according to both.

[@preetijangid9689]

Apne kya treatment liya tha muje bata sakte h ? ye problem mujhe Sep. 2020 se start hui thi or abhi tk Tab. Modalart 50mg se 200 pr aa gayi hu or abhi tk chal rahi h jaipur main Dr. Bhavana sharma neuropsychiatrist ka treatment chal raha h