The story of Sophie
My name is Sophie and I was diagnosed with a rare blood disease called TTP, four days after giving birth to my son. TTP only affects around 1-6 people per million so is classed as an ultra rare disorder.
I had a relatively normal pregnancy up until 8 months in, when I suddenly had episodes of confusion, visual disturbances and left side numbness. Despite visits to A and E, nobody could tell me what was wrong. When I went into labour, my platelets dropped significantly and I began to bruise all over my chest and back. It was then that TTP was suspected after my bloods were sent to a local University Hospital. TTP is triggered by an over reactive immune system and it specifically attacks an enzyme called Adamst13. This enzyme usually helps regulate normal blood clotting but, without it, clots begin to form and block the small blood vessels in the body. Without treatment, organ damage can happen and without treatment, 90% of patients die.
I had to have plasma exchange, where my own blood and plasma was replaced with healthy donors and this was followed by 4 weeks of immunotherapy.
I had never heard of TTP before and honestly, I still wish I hadn’t but, this is a condition I will now live with for the rest of my life. I am trying to learn to live alongside the fear of living with a rare disease but, it does present its challenges. Moving forward, there is a chance I could relapse so I have 3 monthly blood tests to monitor what my blood is doing and I can then receive treatment if and when I may need it.
TTP can be triggered by infections, stress, surgery or, as in my case, pregnancy. I was never warned about the risk of TMA’s or rare conditions during my pregnancy but, I wish I had been more aware. Now, it’s my mission to raise awareness of conditions like mine in pregnancy as without awareness, people will die when their loss could be prevented! Quick treatment is vital in TTP and other blood clotting disorders related to pregnancy so awareness of rarer disorders could save lives.