An Ayr teenager who lives with a number of rare and complex medical conditions wants to raise awareness about Cavernomas for Rare Diseases Day (Sunday, February 28).

Iona Atkins is a truly remarkable girl. Given the number of rare and complex medical conditions she lives with she is a shining example of courage, determination and positivity.

At the beginning of 2020, Iona began having seizures caused by symptomatic cavernomas - a collection of abnormal blood vessels in her brain which can bleed and cause a number of symptoms such as seizures, fatigue, headaches and stroke like symptoms. It was the latest in a series of hurdles the youngster had to overcome.

Iona, 19, was born with the rare genetic condition of Turner Syndrome, a chromosomal abnormality where she is missing an X-chromosome. Turner syndrome can cause various problems such as growth, fertility and in Iona’s case, repeated urinary tract infections and ear infections.

When she was five, she developed a serious complication from the ear infections, a cholesteatoma, an abnormal growth in the inner ear which caused hearing loss.

In planning surgery to treat the cholesteatoma, a CT scan showed a shadow in Iona’s brain, which an emergency MRI scan revealed to be a craniopharyngioma brain tumour. Ten hours of invasive brain surgery followed to removed the brain tumour but left Iona with damage to her pituitary gland causing multiple hormone deficiencies.

Unfortunately, the brain tumour started to grow again and in 2009, when Iona was seven, she underwent six weeks of intensive radiotherapy treatment. It is thought that Ionas’s cavernomas, of which she has four, are a result of damage caused by the radiotherapy treatment.

The cholesteatoma continued to cause problems with multiple operations to both ears resulting in severe hearing loss and a life-time of numerous medications and nightly injection. Iona continued to show immense courage and determination and despite surgery within weeks of sitting her exams, she gained seven GCSEs.

Ayr Advertiser: Iona (right), her mum, Ann, and beloved rescue dog, Pongo.Iona (right), her mum, Ann, and beloved rescue dog, Pongo.

Ann Atkins, Iona’s mum said, “There are so many people living globally with rare diseases and because they are rare, very often there is little funding for support, research etc.

“It is important to try and raise awareness so people can realise the challenges that many people face. Certainly, in this last year it has been particularly challenging with many appointments, follow-ups and procedures cancelled.

“Rare Diseases Day gives a platform for awareness and voices to be heard.”

Iona is now a young person’s ambassador for Cavernoma Alliance UK. She has raised a large amount of money for charity, especially the Brain Tumour Charity.

Once COVID restrictions ease, Iona wants to pursue her dream of becoming a play specialist in a hospital or a support in school so she can help other young people.

Turner Syndrome will affect approximately 1 in 3,500 females.

Craniophyrngiomas occur in around 1 in 1,000,000 of the population.

There are just 3 recorded examples worldwide of a girl with Turner syndrome having craniopharingioma.

Hypopituitaryism occurs in around 1 in 100,000.

Cavernomas although thought to occur in 1 in 600 people, only 1 in 400,000 will have symptoms.