'A Note of Hope' from Hania, creator of the ‘Fullabilities’ Project: “I know I have a lot of obstacles…but I have always had a very strong will to live!”
- Ellie Howe
- Nov 17, 2023
- 7 min read
Updated: 4 days ago
Fullabilities is an initiative founded by a group of passionate young people from Poland, dedicated to raising awareness about disabilities and rare illnesses. At its heart is Hania, who leads the Fullabilities team from her bed, as she has been unable to sit upright or stand without losing consciousness for over five years. Despite the overwhelming challenges she has faced over the last decade, Hania is passionate about advocating and providing a platform for others facing similar struggles.
As she poignantly remarks, in an exclusive interview with A Note of Hope Creator Ellie: “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.”
This Hania's story.
Hania's Rare Conditions: Ehlers-Danlos Syndrome, Dysautonomia, and Chung Jansen Syndrome.
On a daily basis, Hania copes with relentless muscle and joint pain, digestive issues, and debilitating migraines. But, like many people living with rare and complex conditions, her path to diagnosis was long and frustrating.
“As a child, I never questioned my unusual flexibility.” She explained, “But now, I realise that the extreme range of motion in my fingers, elbows, and knees was an early sign of EDS.”
Despite showing symptoms from an early age, it took several years for Hania to be diagnosed with multiple chronic health conditions, including Ehlers-Danlos syndrome (EDS), severe dysautonomia, hypermobility, and chronic gastritis.
Ehlers-Danlos Syndrome (EDS) is a connective tissue disorder that affects collagen, making joints overly flexible and prone to dislocations. As a child, Hania didn’t fully understand what this meant and simply saw it as an amusing quirk, entertaining friends and family with "party tricks," like rotating her hands nearly a full circle. However, as she grew older, her extreme hypermobility made her more prone to dislocations and injuries. There are over 13 types of EDS, and Hania has Hypermobile Ehlers-Danlos Syndrome, the most common type, which primarily affects joint stability as her connective tissue is too lax to properly support her them, making them prone to slipping out of place, causing chronic pain, frequent subluxations, and fatigue.
As well as this, EDS is commonly associated with a range of comorbidities, which are conditions that occur alongside the main diagnosis. One of the most debilitating for Hania is dysautonomia, a disorder of the autonomic nervous system, which is responsible for regulating involuntary bodily functions such as our heart rate or blood pressure.
For most people these functions adjust automatically – for example, when a healthy person stands up, their body quickly stabilises blood flow to the brain, preventing dizziness or fainting. But in Hania’s case, this system doesn’t function as it should.
“When I try to sit or stand, my heart rate jumps from my usual resting rate of around 100 bpm to 175 bpm,” she explains, “My blood pressure plummets, my vision darkens, and within seconds, I lose consciousness.”
Because of this, Hania has been completely bedridden since 2018, unable to sit or stand without fainting. As a result, for over half a decade, she has been unable to walk, stand, or even sit upright without losing consciousness.
"I still remember the last time I walked before everything changed." She recalls, "It was October 8, 2018. I had just gotten back from a doctor’s appointment with my mum. She helped me into the bathroom, I did my business, and then I fainted. I never walked out. Now, I’m slowly forgetting what it even felt like to walk or sit upright, and that truly scares me."
She goes on to say, "I don’t know how to explain the complicated mix of emotions I felt in those first days and weeks. I couldn’t see my future. I was so unbelievably scared because nobody knew what was happening to me or why. I spent most of my day’s unconscious, terrified that one day I’d faint and never wake up again. I was only 13 years old."
To help manage her condition, she’s recently begun specialised physiotherapy aimed at helping her regain movement without fainting, buts it's a slow and challenging process. She also uses a specially adapted wheelchair that allows her to remain horizontal when she leaves the house. It’s made a big difference, giving her the chance to get out more.
Still, for most of her teenage years, while her friends were attending school, socialising, and navigating the usual ups and downs of adolescence, Hania has mostly been confined to her bed. And coming to terms with the fact that this has been her reality for over half a decade, with no end yet in sight, is something she continues to grapple with every single day.
"Every year, I ask myself the same question: Do I think I will ever walk again?" she shares, "And every year, I feel less and less certain of the answer. But I do know one thing and that is that I’ll be okay. That’s all I know for now, but it gives me hope."
In recent years, Hania has also received another life-altering diagnosis of Chung-Jansen Syndrome, a rare genetic disorder caused by a PHIP mutation. To put into perspective just how rare it is, there are only about 400 known cases worldwide. Even within that small number, Hania’s specific variant of the mutation is unique, making it difficult to know which of her symptoms are directly related to the disorder. Chung-Jansen Syndrome is associated with developmental delays, intellectual disabilities, behavioural differences, and a range of physical health issues, but because research is still ongoing, doctors don’t have many answers about what this means for her long-term.
To find out more about Hania's diagnoses, click the links below:
Hypermobile Ehlers-Danlos Syndrome (hEDS)
Dysautonomia
Chung-Jansen Syndrome
Finding joy with 'Fullabilities': "I have found a sense of community and belonging within the Chronic Illness communities!"
With all of this firsthand experience, Hania intimately understands how living with rare and complex conditions can be isolating. This understanding drove her to create Fullabilities, a project aimed at raising awareness and providing a platform for those living with chronic and rare illnesses to share their stories and connect with others facing similar challenges.
Alongside one of her friends from high school, who also lives with a long-term health condition, Hania started the Fullabilities project by interviewing people from the chronic illness community, as well as specialists and caregivers, and sharing these conversations on YouTube and Instagram.
“I have found a sense of community and belonging within the Chronic Illness communities online since I started Fullabilities,” Hania explains. “Hearing people’s 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.”
What began as a small project between two friends has now evolved into a team of 11 young people, all led by Hania. This growth has allowed them to expand their reach and take on a variety of roles within the project.
They’ve also now taken their advocacy beyond social media, visiting schools in their local area to educate students about disabilities, hosting workshops, and pushing for greater inclusivity in public spaces. Hania’s latest venture within Fullabilities is a podcast, a natural extension of their youtube and instagram interviews.
Hania and team lead one of their educational workshops.
Despite the immense challenges she faces, Hania has built something truly extraordinary, working to challenge stereotypes whilst shedding light on the daily struggles of those living with rare and long-term conditions. She reflects on the project’s success, saying, “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 turn it into a foundation.”
and watch Ellie's (Creator and Author of A Note of Hope) interview with the Fullabilities team below:
Hania's 'Note of Hope': "There will be days when it feels hard to keep going, but we can and will make it through."
In addition to her advocacy work, Hania explains, “I am always finding ways to be happy and make the best of things. I want to live my life the best I can.”
Despite everything she’s gone through, Hania has made a conscious effort to stay positive by focusing on the things that bring her joy, particularly the time she spends with loved ones.
“My sister brings so much joy into my life. Despite the age difference, as she’s a lot younger than me, we share a strong connection and bond,” Hania says. “Being at home for so long because of my illness has meant I’ve been consistently available for her. She’s such a gift, and our relationship brings me immeasurable joy.”
Hania with her younger sister.
As well as her family and friends, Hania’s love for learning has always been a big part of who she is. For the past five years, she’s completed most of her high school classes online, studying from bed while dealing with the daily challenges of her condition. Last year, all that hard work paid off when she graduated high school with top results.
Now, she’s taking a gap year to focus on her health and her work with Fullabilities, but her passion for learning remains strong. She hopes to work in the medical field one day and has a strong interest in biology, psychology, neuroscience, and languages. Outside of studying, she enjoys listening to music and podcasts and tutors English in her free time.
At the end of her interview, Hania was invited to share a note of hope, a message she wishes she could have told her younger self, the girl who lived in constant fear of fainting and never waking up. In doing so, she also offers comfort and reassurance to others who may be facing similar struggles.
“If I could speak to my 13-year-old self, I would want her to know that it’s okay to be scared, but we’re going to be okay. I would tell her that the fear of never waking up won’t last forever, and that even when everything feels uncertain, we will find a way through. We’re still here, still fighting, and still finding joy in the little things.
There will be days when it feels hard to keep going, but we can and will make it through. I would want her to know that the strength she has inside will carry her, and the future isn’t as scary as it seems right now.”
Thank you Hania for sharing your inspiring story for the 'A Note of Hope' project!
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