Redesigning life with MS means more than adapting to limitations. It can also mean redefining priorities, reconnecting with joy, and finding purpose through lived experience.
In this episode of the MS Perspektive Podcast, I speak with Paola Escamilla Greenham, MS patient advocate, patient experience designer, and passionate voice for empowerment in healthcare. Paola shares how her life with multiple sclerosis has shaped her values, her work, and her commitment to making patient voices heard.
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Meet Paola Escamilla Greenham
Paola Escamilla Greenham: I’m Paola Escamilla Greenham. I’m originally from Mexico City, and after finishing my university studies, I moved to France. I live in Grenoble, in the southeast of France. Recently, I realised that I’ve now lived longer in France than in Mexico – which was a real shock for me.
Something very close to my heart is improvisational theatre. I started a few years ago, and it brings me so much energy and joy. I truly encourage people living with MS to try it. For me, everything in life now is about joy. If something doesn’t bring me joy, I’m not interested in it anymore.
From Mexico to France – and Across Europe
You have a fascinating international background and you’re active across Europe. How has this shaped your view on living with MS?
Paola: Living with MS while travelling can be challenging, especially depending on your treatment. I was diagnosed in 2014 and I’m now on my fourth treatment. Today, taking a pill is quite manageable, but in the past, injections made travelling more complicated.
What really changed things for me was becoming part of international patient advocacy communities. Locally, I was involved in organisations in Grenoble and worked with hospitals as a patient resource. But something was missing.
In international communities, I found my place. People come from different countries, different cultures, and even different diseases. Yet we understand each other. When I receive an invitation to an event, I quickly check my agenda and ask myself: Can I make it? If yes, I go. I don’t like running behind the train – I like to be ready when it arrives.
Entering Patient Advocacy
What motivated you to become involved in patient advocacy?
Paola: Honestly, it took time. The first years after my diagnosis, I was in shock. There was a lot of fear, crying, and grief. I remember thinking, “This is the last time I’m doing Zumba like this,” and crying in the gym.
After several years, I felt stronger. I decided to stop being afraid and instead try to understand what MS really is. What is possible? What is not? Who am I with MS? That’s when I started getting involved, first locally, and later internationally.
The Aha Moment: Speaking Up as a Patient
Was there a moment that truly sparked your passion for this path?
Paola: Yes. I was invited to a seminar in Paris, with a panel of experts – doctors and researchers. I was the only patient. The moderator asked, “What do patients want?” and then answered the question herself by saying, “They want to get better.”
I raised my hand and said: most of us don’t expect to get better. We want not to get worse. That moment was very powerful for me. I realised: this is my place. This is where patient voices need to be heard – not interpreted by others, but spoken by ourselves.
Learning Through EUPATI and Community
Looking back at the EUPATI course, what did you take away from that experience?
Paola: The biggest gift was the human connection. We worked together for a year and then finally met in person. Crossing the finish line together felt very emotional.
What surprised me was the diversity. It wasn’t only patients – there were caregivers, relatives, professionals, people from many diseases. I learned so much about conditions I had never even heard of. And of course, meeting people with MS from different countries showed me how differently MS is lived across healthcare systems.
For me, EUPATI was about community. That’s what stayed with me.
Diagnosis: A Life Before and After
Can you share your diagnosis story and how MS has changed your life?
Paola: My diagnosis came very fast. I had strange sensations in my face, and my doctor suspected facial paralysis. Tests were done quickly, and suddenly I was told: it’s MS.
There is life before the diagnosis and life after. Even though MS didn’t start on that exact day, that moment changes everything.
What really needs improvement is how diagnoses are communicated. It’s a huge moment in a person’s life. You receive a lot of information in a very short time – and then you’re asked to choose a treatment. How can a patient do that in a 20-minute appointment?
I strongly encourage people to bring someone with them. At some point, your brain simply stops listening. In my case, I was thinking about pizza while my doctor explained serious things. Later, I asked my husband to explain everything again – but he was in shock too.
Finding Joy in Daily Life with MS
What helps you most in daily life – physically, emotionally, or mentally?
Paola: I completely changed my life. I only do things that bring me joy. Like Marie Kondo for life: does this bring joy or not? If not, I don’t do it.
I give myself permission to live my life my way. I don’t justify myself anymore. If I need rest, I rest. If I need to go to the toilet urgently because of my medication, I go. I don’t hide.
Emotionally, passion and joy are everything. That’s why improvisational theatre helps me so much.
The Role of Environment and Generations
How important is your environment – family, friends, community?
Paola: It’s essential. Through improv theatre, I connect with people from their twenties to their seventies. Different generations bring different perspectives.
I’m especially impressed by younger generations. They are more inclusive and naturally understand diversity and disability. Being surrounded by people of different ages keeps my mind open and balanced.
Sometimes, if one door doesn’t open, you just need to knock on another one.
Patient Experience Design
You call yourself a “patient experience designer.” What does that mean in practice?
Paola: It means improving how patients experience key moments in healthcare – especially diagnosis and treatment decisions. How information is delivered, how choices are explained, how shock can be reduced.
Patients shouldn’t feel lost or overwhelmed. These moments can be designed better.
MS, MedTech and Investing
How do you connect your MS experience with your interest in MedTech, Biotech and sustainability?
Paola: I’ve always loved entrepreneurship and innovation. Becoming a business angel allowed me to combine this passion with patient advocacy.
I invest in local companies developing medical solutions. I also encourage other investors to consider MedTech and Biotech. Patients have knowledge that many solution designers don’t. We need to be involved from the beginning.
Empowerment Through Lived Experience
What role can people with lived experience play in improving healthcare?
Paola: Patients should be involved much more. You can’t truly understand what it’s like to live with MS just by observing. Invisible symptoms start from the inside.
Not every patient wants to speak up, and that’s okay. But those who do should be listened to. Our experiences matter.
Looking Ahead
What development in MS care would you like to see in the next five years?
Paola: I would love to see more translational medicine – using existing drugs for new purposes. We may already have solutions that are not fully explored. This could save time and resources.
A Message of Hope
What message would you like to share with people living with MS?
Paola: Live your life the way you want. Do things that make you happy. Listen to your body.
MS doesn’t have to be the centre of your life, but it deserves a place. If you acknowledge it, it might take less space. And above all: choose joy.
Stay Connected
Where can people find you online?
Paola: On LinkedIn. And please send a personal message when connecting – I value real human connections.
By the way, EUPATI (European Patients’ Academy) is a European initiative that educates and empowers patients to engage in medical research and healthcare decision-making.
See you soon and try to make the best out of your life,
Nele
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