“My bleeding disorder was only discovered and got a name when I was six years old, in the year 1956. The biggest problem for me has been the bleeds into the joints, from which, as a result, I have had very bad joints as an adult. When I was almost 20 years old, there was finally a medicine for the bleeds, but very soon it was discovered that it did not help and an inhibitor was diagnosed.
Without a treatment for the inhibitor but with huge amounts of factor concentrate, I have given birth to two healthy children and have had orthopaedic operations. Starting from 15 years ago, I have been allowed to use medicine at home against joint bleeds and now I can take it in advance (prophylactically). For a few years now, I have been receiving treatment that is succeeding in weakening the inhibitor.”
H., 70 year old female patient from Finland – former member of EHC Inhibitor Working Group
Some people with haemophilia and von Willebrand disease (VWD) type 3 develop inhibitors. Inhibitors make it more difficult to stop a bleed because they render the treatment ineffective. Even though in inhibitor community we have predominantly male patients, we must not forget that VWD occurs with equal frequency among men and women, and haemophilia is also known in women.