Cholesterol Ester Storage Disease (CESD)

The story of Raymond

I would like to share this on Rare Disease Day.

I have CESD (Cholesterol Ester Storage Disease) which is a rare Liver Condition that causes my liver to store cholesterol.

CESD was diagnosed in me over twenty years ago when I was in my twenties but over time it has been taking its toll on my liver. CESD has given me Chronic Liver Disease which started with Fibrosis and is now progressing towards Cirrhosis.

Living with this condition is not easy as sometimes I feel tired and not functioning at my best, but outwardly do not look ill. My liver struggles on a daily basis even when I am well but if I have an infection, cold or flu then the demands on it are greater and that leaves me feeling more tired or more unwell and takes longer for me to recover. For example Last week I had a tooth removed due to an infection but four days later I am still waiting for it to stop bleeding and clot completely, this is caused due my reduced platelet count caused by the Liver Disease.

Having a rare disease means you do not always have answers to all your questions and you have to do some research yourself. In addition your condition may not be understood by other people especial if you have no outward symptoms.

I would like to praise the Liver Unit at Kings College Hospital London for their support and helping me to manage my condition.