Meet Angela – her blood doesn’t clot

40 year old Angela Lloyd knew from an early age that something about her just wasn’t quite right.  Growing up she was constantly covered in unexplainable bruises and her parents always referred to her as a “bleeder”.

She wasn’t diagnosed until 1997 when she was forced to undergo relatively routine surgery to have her tonsils out.  During the operation she began to bleed uncontrollably.

“My mum and dad lived in Germany, and my mum had come over to look after my son (side note: she also had massive blood loss during child birth that went undiagnosed) while I was in hospital,” Angela tells the Liverpool Echo.  “But my mum called my dad to come home because they weren’t sure I was going to make it. I was losing so much blood and, despite transfusions, we couldn’t see any end, it just wouldn’t stop.”

Doctors suspected that Angela may have von Willebrand Disease, but the tests for vWD came back negative and she was discharged.

“But I told them I couldn’t accept that,” says Angela. “Young and naive as I was I had thought there was something wrong for a long time and, having come close to death, I couldn’t go through that again.  They said there were a couple of other conditions but they were very rare, so I said ‘test me for those’.”

After many tests it was discovered that Angela suffers from a severe form of Platelet Storage Pool Deficiency – a very rare disorder in which amount and contents of certain types of platelets make the patient bleed for a longer time because they do not function properly once activated.

With that knowledge some may choose to live in fear; Angela has chosen the opposite.

“I monitor my activities. I go to the gym but if I overdo things I can have swelling and bleeding to my joints – I won’t be going rock climbing or doing anything where I’m liable to cut or hurt myself.”

“It can be difficult. Bruises appear, and people look at me like I’m a victim of domestic abuse, and at my husband Chris very strangely.  But I can’t worry about that, I just have to get on and enjoy my life with the restrictions I put on my life.”

If Angela needs a procedure – anything from surgery to having a tooth removed – she must receive a platelet transfusion ahead of time to make sure that there are enough healthy platelets on hand.

Angela’s story highlights the need for patients to ask questions and demand answers about their care.

Photo Credit – Liverpool Echo

webleed.org – your source for bleeding news!