Dr. Lilyana Amezcua gives a creative voice to MS through a lens

I consider myself beyond fortunate to have always been surrounded by strong, educated, intelligent, warm, kind and loving women. Coming from a culture where the mother is at the head and center of her tribe (against what the media would like to portray), there was never the question of who the boss was at home 🙂

Now this article is not about delving into a sociological or historical study of the place of women in our society or within the work place but rather to celebrate them, their accomplishments, their dreams and their boundless, relentless strength and love.  I am so proud to be a woman, and to have had the opportunity throughout my life to learn from and look up to family members and friends who would push me to elevate myself and aspire to greatness rather than to accept the status-quo.

Today, more than ever, there seems to be a wakening of global consciousness and recognition of women as an integral and intrinsic part of our society.

So without any further ado, today’s shout out is to my dear friend and Dr Lilyana Amescua, Neurologist and Multiple Sclerosis (MS) specialist at the University of Southern California. We met over 15 years ago while living in LA, through our mutual best friends. She was at that time a student living away from home. I really got to know her better when she moved back to Los Angeles. From the very beginning, I was charmed by her natural beauty, her calm and cheerful demeanour but above all I was drawn to her humility and open-mindedness.

But not to say that the Latina in her doesn’t show up when needed! (i.e on the dance floor).

I know that MS is not necessarily a topic one would expect to see on Discover Out Loud but I believe as part of my efforts to bring awareness to people and subjects, I have to remain open-minded. In this case, Multiple Sclerosis takes up a considerable space in Lilyana’s life and in here she attempts to give the disease a voice using Art as her outlet.

A while ago, Lilyana met Director Melanie D’Andrea and decided to make a documentary like no other around the topic of MS within the latino community. Quite interesting to bring together two worlds seemingly so different and create a work of art around a topic so unsexy and scary.

Since its release the documentary called Dentro de Mi has received many accolades and additional research awards which hopefully will help to shed light and improve the lives of those affected and their families.

INTERVIEW 

DR. LILYANA AMESCUA 

How long have you been practicing? How long have you been involved with the MS department?

I have been practicing medicine since 2002 and involved in treating and taking care of MS patients since the onset of my fellowship training (2006) at the University of Southern California (USC), MS Comprehensive and Research Center.

Why did you decide to become a doctor? And why this particular path?

Becoming a doctor has always felt like the most natural thing and easy path that I can take.  My life is usually driven by events that have made a huge impact in my life and that happen early when about 10-12 years old my younger brother was diagnosed with a neurological condition.  This was a catalyst for me to learn everything I could about how the brain functions and look for ways to repair it.  How I ended up in MS, is another similar story where it only took me a minute for me to see my brother’s reflection in a young man who was in the ER and I would be the one delivering the diagnosis of MS.  

Any funny hospital stories you can share?

There is always some humor one can find and very much-needed when one is dealing with suffering.  A common mistake that occurs is when someone calls for urologist at 3 am and you get a neurologist. . . you got the wrong end!

If you had to do it all over again, what would you do differently?

At this point in my life, every fall, every lift is perfectly placed.  I would have done it the same.

What are some of the misconceptions people have about doctors?

That we know exactly what’s wrong with you, that we are infallible geniuses!

What is the future of MS?

It’s very promising.  We have 14 medications that may help modify the disease and so many studies focusing on repair.  All of this is super existing, but what is also exiting is that we are now also paying attention to the sociocultural aspects of the disease.

Would you like to make more documentaries? 

Yes and no, I would like to continue developing short film as tools that can educate and promote better outcomes in MS.  This short film is unique because of the special effects it combined. . . I am less incline to use classical documentaries.

How is making movies different from your job?

I see this as a different language or way of communication and wow did I learn something new!

Have you ever failed?

Of course, without failure there is no mountain to climb.  I like to think of failure as stepping-stones to success. 

What message would you give the young ones out there?

“Its not what happens to you, but how you react to it that matters.”  Life will always be full of surprises that may include loss, hurt, disease.  Each event may require deep thought of oneself, which in the end may help you to be a better person.  Don’t ever give up.

CONVERSATION BETWEEN DR. AMEZCUA & FILM MAKER MELANIE D’ANDREA

ABOUT THE STORY

MELANIE

It was important for me to understand the science, the trends in mis-diagnosis, the variety of symptoms of MS (somatic, psychological, etc.). Dr. Amezcua and her team sent me research, papers, trends and held live sessions to explain the realities of MS and the holes in the understanding.  To accentuate the science, to absorb the science – we have to feel emotionally. Facts can come and go but experiencing someone’s circumstances last in our memory. They make us curious.    

LILYANA

This is so true and I agree with Melanie.  MS is already so complex and most documentaries or informational outlets focus on explaining it with right away focusing on current treatments that the emotions and patient experience is blunted. 

MESSAGE  | ACTORS

MELANIE

The next steps in the process were to find our subjects. I spoke to many individuals with M.S., met with them in person and discussed their lives. What it was like to with time see their bodies, abilities and lives change. Quickly I realized a pattern – all individuals with M.S. felt a lot of darkness, sadness, fear. I knew we had to tackle this and to be honest to the condition. Sure, we want to inspire proper practice, and at the same time, we do not want to mislead the impact that this diagnosis can have.

I feel responsible to the subjects who were a part of it. They opened up deep aspects of themselves, they were brave to come out and tell their stories and let us into their lives, into their thoughts and waves of emotions. For them, and for so many with M.S. or with loved ones with M.S., I hope it can serve them.  As I mentioned before–  the M.S. diagnosis is not a light one– I felt it would have been unfair to portray it as such. We have to accept its vastness.  This documentary and story is about finding your inner-light, your inner strength and make important choices each day that can significantly change your trajectory. That is what is so exciting about M.S. research today— a lot can be done to improve chances of a prolonged “normal” life.

Another important message is that yes, your life will change and so will your abilities. Within those abilities you’ll have, you will be able to live a purposeful, inspired and happy life.

LILYANA

That’s right the specific recruitment of subjects was key.  That is to say that although subjects from the existing Hispanic/Latino registry in MS has over 400 subjects enrolled, knowing their environment brought a whole different level of involvement.

Melanie is so right that  there are many treatments for MS and that today is a very different time to have MS compared to 20 years ago.  Nevertheless, the darkness of not knowing the future is there and needs to be talked about.  My hope is that this short-film is able to teach cultural sensitivity to physicians, students, patients and their communities and modify perceptions of the disease.  We hope to test this in a standardize fashion.  But our work has barely begun. . . .as the concept of short film in medical investigations is rather new.

MAGICAL REALISM

MELANIE

Since our target audience was always recently diagnosed Latinos… I knew we had to frame the story in a way that Latinos can respond to. I immediately thought of South American myths and tales that teach morals and about life. A good portion of them are based in horror. Many of them are magical, some are scary.  Therefore I knew that magical realism would be the perfect frame for the stories of our subjects. 

LILYANA

Indeed, illness perceptions are known to influence outcomes in disease and understanding can be key to success or despair.

FEEDBACK

The feedback has been tremendous!  We had the  opportunity to present the concept of the short film to the Consortium of MS Centers in Maryland (June 2016) and it received Best Platform Presentation Award in Patient Education. 

The Film was previewed both at USC and in Mexico City to over 600 researchers, students, clinicians, foundations supporting MS and patients/families combined. The silence and tears that follows after viewing proves that it deeply connects and resonates with many.

For many it is a catharsis – they have told us that they finally see an honest portrayal of how they feel and what they go through. Families of MS patients have felt they understand their loved ones better.  For me, one of my favorite trends in the feedback is “I was not expecting this at all… I was expecting a regular medical documentary”. 

CLOSING WORDS

MELANIE

In the end, I am so grateful the doctors took a giant leap away from the informational documentary and trusted this idea.

I am proud of what the Medical and Film team have created. We really do feel we have something powerful that can help people feel connected to MS, to learn more about it. It will be used through Dr. Amezcua in innovative educational ways for the community and we do hope to release it publicly as well. In test screenings we have seen that the message is Universal.  I am excited for it to serve whomever stumbles upon it online.

LILYANA

I am forever changed with this film and experience.  We worked so well as a team!

 
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