My Story as a Caregiver and Patient Advocate

This all started the day we heard the words, "This is better than the best-case scenario." You can go back to your life."

I realized I no longer knew what our life meant.

For almost two years, we lived in hospitals, separated from my husband and older son, focused entirely on helping our younger son, Viktor, recover.

Everything else stopped.

How It Started

In November 2017, Viktor was diagnosed with Langerhans cell histiocytosis. His treatment lasted nearly two years and included chemotherapy, followed by long periods of waiting for his immune system to recover before the next phase could begin.

Like many parents, I was suddenly thrown into a world I didn’t understand.

I had no medical background, yet I needed to make sense of complex terminology, treatment plans, and decisions that affected my child’s life.

Viktor during the treatment

Learning Medicine Language

One moment from the early days still stands out. 

A nurse asked me to measure Viktor’s diuresis. 

I didn’t even know what the word meant. If another mother in the next room hadn’t stepped in to explain, I wouldn’t have known how to help my own child. 

With a goal of transparent communication, diuresis is the measurement of the amount of liquid the patient expels through urine or stool due to retention. If this isn't happening, patients would have to take medicines that cause this process (diuretics).

That moment stayed with me. I realized how easily families can feel lost, not because they aren’t capable, but because no one is translating the language for them.

So I started doing that translation myself. Slowly, carefully, and with purpose. I began researching how patients and caregivers could communicate more effectively with healthcare professionals and take an active role in their own or their child's care.

The Story of a Tree

Outside our hospital window stood a single tree: nothing special, maybe a cherry or sour cherry.

The story of a tree...

When we arrived, its branches were bare.

Then the snow covered them.

Later, they blossomed.

Finally, the first fruits appeared.

That tree showed me how time keeps moving, no matter how heavy our days felt. Even when fear and bad news filled my mind, the tree reminded me that life continues. Seasons change. New leaves always grow.

Watching that tree helped me believe we would eventually walk out of that hospital and never return.

After Treatment: A Shift in Perspective

When we finally returned home, I understood how fortunate we had been. Viktor’s diagnosis came relatively quickly. A treatment protocol existed. The medication was available through public health insurance. Many families facing rare diseases don’t have that experience.

That realization changed everything. My husband and I knew we wanted to stay involved and support others who were facing even greater uncertainty. We began collaborating on conferences, supporting the development of a rare disease registry, and participating in discussions with decision-makers. What started as curiosity turned into responsibility.

Finding My Voice Through Storytelling

In 2022, a friend invited us to share our story on a nationally televised program. The response surprised us. Messages came from people we didn’t know, thanking us for saying aloud what they were living through in silence.

That experience led to the creation of the Rare and Share podcast.

Our studio for the Rare and Share podcast

The goal was simple: give patients and families a space to speak honestly and be heard. We built a small, improvised studio and recorded after work hours. Guests arrived as strangers and left as something closer to friends.

We bought the equipment (lights, camera) and put some plants to make it feel like a living room, giving our future guests a relaxed, calming vibe.

We also printed a banner with the podcast's name, which stands between our guests and us during every episode. And we needed to wait until after working hours to record, since it was cramped, and we needed the late evening hours to start.

After welcoming every guest, offering them tea or coffee in our branded mugs, I would invest myself into our conversation, so that everything else disappears:

I would forget about the mic, camera, and lights, and listen to the human stories of searching, facing brutal truths, overcoming obstacles, and finding strength within ourselves to navigate everyday struggles.

Some of the guests we knew beforehand, but some we met for the first time minutes before the recording.

• I learned how to listen deeply. 
• How to ask clear questions. 
• How to hold space for difficult truths. 

And how powerful it can be when complex medical topics are explained in plain language.

The podcast didn’t just tell stories. It sparked action.

Conversations led to new initiatives, advocacy efforts, and collaborations that continued well beyond the recordings. Just like that tree in spring, we spread news like branches, and leaves of initiatives grew with time.

From Experience to Expertise

Through this work, I became confident in my ability to communicate across gaps: between patients and clinicians, and between families and researchers.

I was no longer afraid to ask questions. I knew how to ask the right ones. I invested time and energy to fully understand the landscape.

For anyone familiar with epic fantasy, this journey through the European medical landscape often reminded me of a fairy tale: one young wizard facing a powerful enemy, supported by wizards, sorcerers, and creators of magical potions, working together to defeat the threat and restore life to the “village”.

If my “quest” was to learn every spell needed to confront a rare diagnosis as the main adversary, then healthcare professionals are the wizards and sorcerers, empowered by knowledge, technology, and genetics.

Together, we are on a path toward answers and toward giving patients and their families hope during the diagnostic journey.

In 2021, I took my first formal step by attending an EURORDIS training focused on scientific innovation and translational research for patient representatives. It gave me tools to better understand research and to turn information into practical, usable resources for families.

What began as self-education became a profession.
Becoming a Patient Advocate

In 2023, I applied to the EUPATI Patient Expert Training Programme. Joining the program felt like a commitment—not just to learning, but to long-term advocacy.

Patient Expert Training Programme, Madrid (Spain), 2024

Over a year of intensive study, we covered the development of medicines, clinical research, and health technology assessment.

It felt like finally learning the rules of a world I had already been thrown into, a world of wizards and dragons.

The dragons were the big, complex systems: regulation, reimbursement, and clinical trials. Powerful, intimidating, and dangerous if you approached them without preparation.

The wizards were the experts: researchers, regulators, policymakers – people fluent in a language that decides who gets access to treatment and who has to wait.

Through the training, I learned how to approach both. How to ask the right questions, when to listen, and when to speak. And I learned that in different countries, the “dragons” behave differently, and the “wizards” follow different rules.

Naming those differences out loud isn’t complaining: it’s how you make the map more honest for everyone who comes after you.

In 2024, I left my job to become a full-time patient advocate. I joined a patient organisation supporting families affected by rare neurotransmitter diseases and launched my own consulting work, focused on communication, strategy, and ethical storytelling in health.

Closing the Circle

One year later, I returned to the same training programme, this time as a member of the Faculty Committee for the Patient Expert Training Programmes' final in-person event. 

This was the largest audience I have addressed, with over 100 people from more than 30 countries worldwide, representing a range of diseases.

Standing in front of new trainees from across Europe, I wasn’t sharing theory. I was sharing a lived experience. I was helping others find their voice, just as I once had.

Faculty Committee of EUPATI Patient Expert Training Programme, Madrid (Spain), October 2025

A quiet conversation over breakfast with a trainee from Finland reminded me why this work matters. On the first day of the in-person event held in Madrid (Spain), I was presenting EUPATI Connect, a useful tool for Fellows to connect with researchers and academia when there is a need to include patient experts in clinical studies or similar processes.

She thanked me for speaking clearly, slowly, and thoughtfully, because it made the space accessible to her. She could follow the presentation because it aligned with my speech and made the importance of all the tool's options clear.

In that moment, I understood how far I had come.

Much like a tree in autumn bearing fruit, this phase of my work was about contribution. I expanded a network of educated, empowered experts, shared knowledge on effective patient involvement, and offered clear, practical insight into how patient advocacy works in practice.

From caregiver to advocate. From learner to teacher.

That is the strength of patient advocacy.

Community.

Connection.

And the simple, powerful act of sharing knowledge.