Q: Tell us about you?
What health conditions do you have and how have they affected your life?
I'm Hanna, I’m 18 and I live in Poland. My journey with health challenges began in 2016 and I was diagnosed with a complex set of conditions, including EDS (Ehlers-Danlos Syndrome), severe dysautonomia, hypermobility, and chronic gastritis.
I've also been diagnosed with Chung-Jansen syndrome, a rare disorder related to a PHIP mutation. I'm among only 400 patients in the world with this diagnosis, and my particular variant of the mutation is unique, making it difficult to pinpoint which of my symptoms are directly caused by it.
When I look back on my childhood, I realise that the unusual flexibility and range of motion in my fingers, elbows, and knees I experienced were early signs of EDS. My joints move in unconventional ways, and my hands rotate almost a full circle. While these "special talents" can be a great party trick, I am more prone to dislocations and joint injuries.
My joints are so flexible that I often struggle to keep my hands and arms straight, as they tend to bend beyond my control. On a daily basis, I struggle with muscle and joint pain, gastrointestinal issues, and migraines.
Chung-Jansen Syndrome
Chung-Jansen syndrome is a rare disorder- also called PHIP-related disorder. The syndrome is caused by a heterozygous mutation along the PHIP gene.
Dysautonomia
EDS (Ehlers-Danlos Syndrome)
Hypermobility Syndrome
Chronic Gastritis
Q: What has been your biggest challenge, or the hardest thing you've had to come to terms with, since your diagnosis?
Since 2018, I've been bedridden as I’m unable to sit or stand without losing consciousness. When I sit up my heart rate rockets from my average resting rate of about 100bpm to a scary 175bpm. This causes my blood pressure to drop drastically and I end up fainting.
Sometimes I can be out for minutes at a time - which is different from many other patients who have typical dysautonomia symptoms, as usually they regain consciousness quite quickly and they also don’t faint every time they sit up. However, I only regain consciousness when I am put into a horizontal position. Although, there have also been times when I’ve fainted whilst lying down - which is bizarre! This is the reason I have to remain bedridden and in a horizontal position constantly. I even have a wheelchair that is adapted so I am reclined.
it’s been 5 years since I’ve been completely bedridden, unable to sit or walk, and each time I try to sit up, or at least raise my head, I lose consciousness.
I still remember the last time I was able to walk. It was the 8th October 2018, I had just got back from a doctors appointment with my mum. She helped me into the bathroom, I did my business, and then I fainted and was never able to walk out.
Now I am slowly forgetting how it felt to be able to sit or walk, and that truly scares me.
I don’t understand how it is even possible that it’s been 5 years already; times itself is frightening and how quickly it passes.
I don’t know how to explain the complicated range of feelings I experienced for those first few days and weeks. I could not see my future. I was scared, so unbelievably scared because nobody knew what was going on or why this had started happening to me. I spent the majority of my days in a state of unconsciousness and I was terrified that one time I would faint and never wake up again. I was only 13-years-old.
Every year I ask myself this question: Do I think I will ever walk again? Every year I am less and less certain of the answer. But I do know one thing - that I’ll be okay. That is all I know for now, but it gives me hope.
Hanna uses a specially adapted wheelchair so she can remain in a horizontal position
Q: Despite your challenges, what brings you joy?
Quite a few things!
My sister brings a lot of joy to my life. Despite our age difference - she is 12, so a lot younger than me - we share a strong connection and bond. Being at home for so long due to my illness has allowed me to be consistently available for her. She is such a gift and our relationship brings me immeasurable joy.
I have also found a sense of community and belonging within the EDS and Chronic Illness communities online since I started my Instagram page. In Autumn 2020, I started a project called Fullabilities where I talk to people who live with disabilities and chronic illnesses. Hearing peoples stories and talking about their experiences with them brings me so much joy. Every time I do an interview I feel less and less alone.
I am passionate about music and I love learning new things about the world, particularly facts about biology (I love science!). I was able to get into my dream high school and despite all of my challenges, I am now in my final year and doing really well.
I am always finding ways to be happy and to make the best of things. I want to live my life the best I can. I know I have a lot of obstacles and things that will make my life difficult, but I have always had a very strong will to live and that has helped me find a way to live a fulfilling life.
Q: Can you tell us more about your project Fullabilities?
I started my project Fullabilities with one of my friends from high school, who also has a disability. We wanted to raise awareness of what it is like to live with chronic and rare illnesses. Together we started interviewing people from the chronic illness community, as well as different specialists and carers, and uploading them to our YouTube and Instagram channels.
The project has continued to grow and has gone from strength to strength. Other people from my high school have now joined the project and we are now a team of 11, which has meant that we have been able to expand our reach and take on different roles as part of the project.
Hanna and some of the team at Fullabilities!
On top of our interviews, we have been to many schools to talk with the kids about disabilities and hold educational workshops. Doing this has helped us challenge stereotypes and also highlight the daily struggles of people who live with rare and long-term conditions.
We are also advocating for public places in our local area to be more aware and active about inclusivity. We are thinking of holding events to promote our message even more - we were planning on doing a play at our local theatre, but with our final exams coming up for many of our team members we have shelved this idea for the time being.
Our newest venture is our podcast, which is a natural evolution of our interviews. We have just launched on Spotify and I can’t wait to see where this new part of the project goes!
I am really proud of all the work myself and my team have done to make Fullabilities a success and my hope is that one day I will be able to make it a foundation.
and watch my interview with the Fullabilities team below:
Q: When you look back to the beginning of your journey, what’s one thing you wish you could say to your past self?
I know that during that time, I couldn't envision a future for myself. If I could speak to my 13-year-old self, I would want her to know that we’re doing okay, that we’re still here and still fighting.
Even though some days are difficult, we are able to find pockets of joy amidst the darkness. We’re reaching for our goals that for so long we thought were out of reach and have dedicated ourselves to making a difference for disability awareness. Through working hard in therapy I have found a sense of contentment and peace, and I’ve also made so many new friends within the chronic illness community that has helped ease the burden of loneliness.
Through all of our hardships, we have found strength - that is what I wish I could tell her.
