I was five when I first started going to hospitals.
Growing up, being unwell became part of my normal.
I went from doctor to doctor, had test after test, and kept hearing the same things:
“Your results are normal.”
“It might be psychological.”
“Maybe you're exaggerating.”
But I knew how I felt inside my own body.
I am a scientist by training, with a Master of Science from KTH Royal Institute of Technology in Stockholm. I had been taught to ask questions, look for patterns, and search for explanations.
But when it came to my own body, I had none.
And as the years passed, I was getting worse.
By college, I was in a very bad place. Severe lower back pain made it difficult to walk. I could barely tolerate food.
Sometimes even breathing felt difficult. My body was taking away more and more of my life, and I still had no idea why.
Eventually, I was referred to a rehabilitation centre in Stockholm and diagnosed with hypermobility, hEDS/HSD.
For the first time, there was an explanation.
But there was no roadmap for what came next.
I was told there was no cure and very little I could do beyond managing the symptoms.
I finally had a diagnosis, but I was still struggling, still frightened, and still full of questions.
So I started searching for more.
I went into the research. 'I pursued further education in hypermobility and movement, learned from specialists and programmes including Jeanie De Bon and The Ehlers-Danlos Society, and began trying to understand what all of this knowledge actually meant for my own body.
There was no simple answer.I tried things. Some helped. Some didn't. Sometimes I pushed too far and had to start again.
Slowly, I began to understand that getting better wasn't going to come from forcing my body to behave like everybody else's.
I had to learn how to work with the body I actually had.
And through the hardest part of that process, I needed my sister more than ever.
Ines Illipse, MSc
Co-Founder · Scientist · Patient Expert
MSc, KTH Royal Institute of Technology, Stockholm · Specialist training in
Hypermobility and Movement Therapy
While Ines was falling apart, I was trying to hold things together for her.
But the truth was that I had been struggling with my own body for most of my life too.
I am a scientist by training. I hold a PhD in Medical Image Analysis from Paris Descartes University, completed my postdoctoral research at Karolinska Institutet in Stockholm, and later worked there as a Senior Research Specialist.
I had spent years in medical research.
And still, I couldn't understand my own body.
I had also grown up going to doctors. I had also been told that my tests were normal. And I had spent years trying to reconcile what medicine was telling me with what I was actually experiencing.
I used to look at other people and wonder:
How do people wake up with energy?
How do they work, go out, make plans, laugh, feel joy, and then wake up and do it all again?
Why couldn't I just be normal?
Why did everything seem to require so much more from me?
What was wrong with me?
Those questions followed me for years.
Then Ines got her diagnosis.
I started reading because I wanted to help my sister. I wanted to understand what was happening to her and whether there was anything we could do.
But as I read, I started recognising myself.Symptoms I had lived with for years.
Experiences I had never connected.
Things about my body that I had learned to ignore because nobody had been able to explain them.
Suddenly, I wasn't only searching for answers for Ines.
I was beginning to find answers about myself.
Our Story
Ines & Maya Illipse
Sisters, Scientists, & Co-Founders of ParaMotion.
We started looking together as scientists, patients and partners.
We Became the People We Needed
When there was no one to help us connect the pieces, we learned how to connect them ourselves. We gave each other the guidance, belief, patience, and understanding that we had needed for so many years.
And we could not have done it alone.
Our sisterhood saved our lives.
When one of us said, “Something isn't right,” the other didn't need proof before listening.
When one of us was too exhausted to keep searching, the other could carry the search for a while.
And when one of us started getting a little better, it gave the other a reason to believe that things could change for her too.
That is where ParaMotion really began.
We created ParaMotion because we know how lonely this journey can be. We know what it is like to spend years trying to understand a body that doesn't seem to follow the same rules as everyone else's. We know how much it matters to finally meet someone who understands what you are talking about without needing you to explain every detail.
And we know that science matters deeply, but also that science has not answered every question our community is living with today. So ParaMotion brings together what we have spent years searching for ourselves: science, specialist knowledge, community discoveries, lived experience, movement, and practical ways of managing life in our bodies.
We want to be for others what we learned to become for each other. Someone who believes you, helps you understand your body and conditions, give you the best tools to work with your body and start feeling better. Hypermobility may be part of what connects our family. But now it connects us to a much bigger one too. A community of people trying to understand their bodies, support one another, and build the best quality of life that is possible for each of us.
ParaMotion is our way of being for others who we needed all along
