"A rare non specific severe bleeding disorder"

About: University Hospital Of Wales / Clinical Haematology

(as the patient),

I am 61 years old and over the years have experienced numerous severe bleeding episodes associated with surgery and childbirth.

At the age of 29, I was first made aware of the doctors suspicions that I had a bleeding disorder after a catastrophic bleed following a hysterectomy. However, it was not made clear to me exactly what the diagnosis was and I came away from the experience thinking I had a factor VIII deficiency. A deficiency seemed to suggest something like anemia not something really serious.

Last year following extensive tests at the Arthur Bloom Haemophilia centre, it became clear that it was a rare severe bleeding disorder which is non specific, I have an elevated prothrombin consumption index.

I have decided to tell my story as I had hoped that my condition could be treated with plasma and blood products in an emergency or for elective surgery, However, as an added complication I have now developed an anaphylactic response to blood products which means I cannot have treatment.

A few days ago, I collapsed during plasma administration due to the anaphylaxis and it was only thanks to the very quick thinking of my haematology nurse Alison that i did not arrest.

I am so grateful to my team who were so quick in helping me. However, it has left me feeling frightened and unsure of the future. As i am getting older and who knows what the future holds.

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