I HAVE CYSTINOSIS, a condition that causes an amino acid called cystine to build up due to the body not breaking it down normally.

This leads to crystals being deposited in the organs, especially in the kidneys and eyes. I was diagnosed when I was just eight months old, being tested due to my sister also having cystinosis.

Back then I was living near Norwich in England but, in 2021, my parents and sister moved to the West Coast of Ireland to start a new life by the sea in County Mayo.

When I was younger, I took a liquid medication to treat the condition, as well as eye drops to help treat the crystals in my eyes, and potassium chloride. I had to come out of school once a day to take the medication. I now take a range of medications, including blood pressure and immunosuppression drugs.

As I am getting older, my symptoms have increased. My muscle weakness is the main issue, in particular, my swallowing muscles and hand muscles. I do exercises to help maintain my strength, and I adapt my daily routines to minimise difficulty.

I attend yearly ophthalmology appointments, and I also attend a renal clinic every three months. In between these, I attend doctors regularly for checkups or if I’m unwell.

Diagnosis for the condition is very difficult, so I am grateful that, due to my early diagnosis, my symptoms were minimal. Excessive thirst and consequently urination were my main challenges. As I grew up and went........

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