"a battle that nearly cost me my life..." A story of medical negligence, and a search for a label.

My story with chronic illness began when I was born, during childbirth I experienced a brain bleed as a result of being born 11 weeks prematurely. This brain bleed leading to a diagnosis of Hydrocephalus.

Though I don’t remember any of the process of being diagnosed with Hydrocephalus as I was young, I do know from family members it was a battle, a battle that nearly cost me my life. 6 major brain surgeries and 19 years later my hydrocephalus is finally controlled, however it doesn’t minimize the anxiety of something going wrong at any point.

Besides having a weakened immune system my health was pretty stable, that was until April 2024. From what started out as fatigue, muscle aches/ cramps, easy bruising and digestive discomfort- soon turned into being rushed to hospital for life saving blood transfusions as I had become critically unwell with dangerously low hemoglobin levels, nearly losing my life once again… due to medical negligence. Months we had been asking for a blood test due to me becoming continuously unwell, months of which the medical professionals would not listen. Monday 24th July 2024 was the day my life changed forever…

Due to the damage from my hemoglobin levels I now suffer from heart complications which medical professionals reduce to “anxiety”.

A year on and I’m struggling more than ever to even simply get out of bed. I suffer from excruciating stomach pains, digestive problems, heart complications, and blood complications. Still no diagnosis or treatment in sight for any of it.

I am suspected as having IBD, POTs syndrome and an unknown blood disorder. The only answers I’ve been given are having a hiatus hernia with the possibility of needing to have my stomach reconstructed and having chronic anemia requiring life saving blood transfusions.

Thank you.

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