There have been times when I thought ‘Why do I have to go through this?’
BRAVE GIRL IS ONE OF A KIND IN THE WORLD Iona has unique combination of rare diseases
A TEENAGER is the only person in the world with a unique combination of rare diseases.
Each of Iona Atkins’ conditions is extremely rare but no one else has the combination of so many.
But despite all her difficulties Iona, 19, from Ayr, dreams of working in hospital wards as a play specialist.
Rare Diseases Day was marked recently and Iona and her mum Ann, 57, a retired police sergeant, want to raise awareness of Iona’s conditions.
Iona has Turner Syndrome, where one of a girl’s X chromosomes are missing and which affects about one in 3500 girls, as well as a range of other conditions.
Most sufferers grow up to be shorter than average, with underdeveloped ovaries and fertility issues.
Girls also have distinctive features and associated health conditions, some of which may be apparent from birth including thick neck tissue, being a small baby, heart conditions and kidney abnormalities.
Ann had never even heard of Turner Syndrome when Iona was diagnosed. But she and her husband Stewart, 53, also a retired cop, soon became experts.
Iona also has cholesteatoma – an abnormal collection of skin cells deep inside the ear. But while doctors planned her surgery to treat her cholesteatoma, they discovered a more serious problem.
Craniopharyngioma is a rare type of noncancerous tumour which begins near the brain’s pituitary gland. As a craniopharyngioma grows it can affect the function of the pituitary gland and other nearby structures in the brain causing gradual changes in vision, fatigue, excessive urination and headaches.
The tumour also led to Iona developing hypopituitaryism, a rare disorder occurring in just one in 100,000 people in which the pituitary gland fails to produce one or more hormones essential to the body’s routine functions including
BATTLER Iona never moans about the medical challenges she faces growth, blood pressure, reproduction, maintenance of temperature, fatigue or muscle strength. At the beginning of last year, Iona began to have seizures which doctors discovered were caused by another rare condition – symptomatic cavernomas in the brain. These are a collection of abnormal blood vessels in the brain, similar to a raspberry in appearance, which can bleed and cause a number of symptoms such as seizures, fatigue, headaches and stroke-like symptoms. Iona has four of them. Only one in 400,000 will have a symptomatic cavernoma.
The chances of one person having all four of these conditions is so high that nobody else has been recorded with them all.
Since Covid hit the UK, Iona has been shielding but now she has had her vaccination and is looking to start play specialist training.
Her proud mum said: “Iona always looks on the positives, never moaning about her treatment or daily challenges she faces and has helped raise a large amount of money for charity, especially the Brain Tumour Charity. She is now also a young person’s ambassador for Cavernoma Alliance UK.”
Iona, who is hoping to be able to join a musical theatre group when lockdown ends to resume her passion for the stage, said: “There have been a couple of times when I have thought ‘Why do I have to go through this?’
“But it is only a blip. I know I can’t really change it and have just got to face it.”
Despite multiple surgical procedures, treatments and tests, Iona showed immense courage and determination. And within weeks of one operation, she passed seven school exams.
MY SISTER Katrin and I are the closest of friends, but we’re also practically strangers.
We first met six years ago when she rang the doorbell of my London home for the first time. And while we’ve spent the past few years getting to know each other, we’ve been cruelly separated again for a second time in our lives.
I had a happy childhood growing up in New York after my mother had emigrated to the US from Ukraine.
She’d met my father at a medical conference and they’d had a fling while he was still married. They weren’t in contact as I was growing up, and as an only child, while I longed for a sibling, I never felt I was missing a dad.
But all that changed when I was 23 and my mother Diana, a doctor, passed away aged 58. I was too old to be an orphan, but I still felt unwanted and alone. My childhood home was sold – a lifetime of belongings packed into storage boxes.
I was in my final year of university, studying modern languages at Oxford. My father met me in London a year after her death. To say we weren’t close was an understatement.
It was only when my mother had decided he should help with my university fees that she had contacted him through the Austrian courts a few years earlier. It meant he had to pay some maintenance, but more than that, there was finally a DNA test to prove he was my father. I’d met him a few times in my childhood and teenage years, but he had been introduced to me as a colleague of my mother’s. I’d no idea he was my father until I was older. A year after my mother’s death, in the lobby of a London hotel, I met my father for the first time as an adult. It was an awkward encounter. I’d tried my best to dress nicely and to charm him with my conversation in a desperate attempt to impress him and to make him want me as a daughter. Instead, our meeting left me with that horrible feeling of being a burden in someone’s life they didn’t quite know how to get rid of. I knew he had two children, a son and a daughter who were both older than me, but they didn’t know about me. He reassured me that he’d tell them of my existence one day soon. So I waited. But as the months and years passed, nothing happened. I knew my siblings’ names, and would say them over again in my head as I typed them into search engines to see if they were on social media. I spent many days over the next 10 years trying to decide if I had the guts to email and tell them I was their sister.
I was living and working as a freelance journalist in London, but still struggling after the death of my mother. I desperately needed family in my life. But I never contacted them. I was too scared I would ruin their lives.
Instead, I focused on making a family of my own. I married a wonderful man, Will, and we went on to have four children.
It was when I was pregnant with my third daughter at age 32 that my father called me. He would call every six months to check in. This time, he explained he’d told his wife and my sister and brother about me. I was shaking with excitement and fear. Would they want me in their lives?
Later that same day I received an from my sister as well as a kind email from my brother, although we still haven’t met. She was so funny and charming, opening up about her family life and her interests. Her tone was apologetic and curious. I was 32 and she was 44 and I was already sad we’d lived so much of our lives apart. “I have so many questions to ask you – and you have probably some for me too,” she wrote. I learned she grew up in Austria, a native German speaker, with our younger brother. We agreed she’d come to London so we could meet. The day we met, a few weeks later, my stress levels were off the scale. I was anxious and sleepless, worrying that she despised me for existing. But it couldn’t have been further from the truth. She rang my doorbell, her arms overflowing with boxes of chocolates and lovely clothes for my kids. We smiled and hugged awkwardly. Within half an hour we were giggling non-stop, interrupting excitedly as we rushed to tell one another everything about our lives. We couldn’t stop smiling as we noticed our many similarities. We were even wearing the same style Cartier wedding band. That first weekend together put in motion a beautiful friendship. My children aged 10, eight, five and three, adore Katrin, and I love my two nephews and niece dearly. Our husbands are also really close and chat regularly. Katrin is one of my favourite people. She’s smart and self-deprecating, funny and charismatic. She loves yoga but enjoys a good glass of wine even more. Having spent the first three decades of our lives apart we’re now playing catch-up, but the pandemic has put a stop to us building our relationship. The one constant pang is missing Katrin when we’ve already lost far too much time. I’m counting down the days until I can give my big sister a hug.
I spent years trying to decide if I had the guts to contact my siblings
Within half an hour we were giggling non-stop, we noticed similarities