My story – Penny
They say some people’s lives are written in straight lines — but mine? Mine started long before most stories even begin.
🧩 The Beginning
I made my entrance into the world much too soon — born at just 29 weeks, weighing barely anything at all: only 2lb 8oz. I was tiny, fighting for my very first breaths. And even then, my journey wasn’t going to be an easy one.
As a tiny baby, I battled severe pneumonia that left deep scarring on my lungs — a shadow that would stay with me. At just 5 months old, my family and I faced something no one expects: I had one kidney removed. Even then, my body was showing us it walked its own path.
When I learned to walk, I didn’t do it like other children. My feet turned inward — pigeon-toed — and my knees knocked together. Doctors looked, measured, and eventually told my mum I had “very, very, very mild cerebral palsy.” It was a label, and for a while, it was the only one we had. But even then, something didn’t quite fit. Alongside my wobbly steps came other struggles: my bladder and bowels never quite behaved as they should. My little body just… didn’t work the way everyone else’s did.
🧩 Gathering Pieces
As the years unfolded, more challenges arrived. Pain became my constant companion. Joints that slipped and dislocated when they shouldn’t. Falls that seemed to come out of nowhere. My knees took the brunt of it — operations to try to keep them in place, learning to trust my legs again, only for them to let me down.
Then came the years of fighting invisible battles — severe endometriosis and adenomyosis that stole my days and nights until, at 34, I made the brave choice of a total hysterectomy. It helped, but my body still had more secrets to tell. The scarring on my lungs had grown into bronchiectasis, and part of my right lung needed to be removed. I was learning that being strong sometimes meant letting parts of myself rest so the rest of me could keep going.
🧩 Searching for the Right Picture
Doctors came and went, each one squinting at my puzzle pieces, trying to see what picture they made.
“Could it be Marfan syndrome?” they wondered.
“Or Loeys-Dietz?” they asked another time.
Genetic tests were run, words written and crossed out, labels suggested and gently set aside. Eventually, Ehlers-Danlos syndrome stepped forward — the hypermobile type, but with features that leaned toward the vascular type. Not quite one thing, not quite another. A strange overlap. An unusual combination.
Recently, another piece found its place: Functional Neurological Disorder. Now, sometimes my legs simply won’t do what my mind asks. Getting up from the floor, trying to walk, even just shifting position — my legs can lock into stillness, temporary paralysis that comes and goes. Add POTS that makes my head spin and chronic migraines that dim the light of my days, and pain? Pain lives with me every single day.
Even Professor Pope at Northwick Park — someone who has seen so much — looked at my history, my tests, my body, and said simply:
“You are a very unusual case indeed.”
I’m even in a medical book somewhere, I had medical photos taken because of my vascular features in my face shape and ears.
🧩 My Purpose in the Puzzle
I still don’t have that one perfect label. I might never have a neat, tidy answer written on a medical chart. But here is what I do know:
I started small — so very small — and I have fought every single day since then. I have walked through doors that never opened easily. I have lived in a body that tests my patience and my courage every single day. And I have learned something precious along the way — that no matter how heavy my load, there is always someone carrying one that feels heavier.
That is why I am here. That is why I volunteer as Area Coordinator for EDS UK. Because I know what it feels like to be the puzzle no one can quite solve. I know what it feels like to be told “your case is unusual” and wonder what on earth that means for your future. If I can hold a hand, share a word, or help just one person feel less alone in their own strangeness — then all of this, every hospital visit and every painful day, has been worth it.
My body may be an enigma. My diagnosis may still be a work in progress. But my heart? My purpose? Those things are clear as day. ✨
“There is always someone who is suffering worse than I am — and I am here to walk beside them.”