The story of the first patient in whom ITI (Immune Tolerance Induction) treatment for the eradication of inhibitors was ever tested is a story that brings great hope. In the early 1970s, Terkel Andersen was a Danish boy who had fought a severe form of haemophilia aggravated by the presence of inhibitors since birth. The illness had put great strain on his health, forcing him to live in a wheelchair when he was just 18 years old. Terkel had also experienced another type of pain, that of losing his older brother, who also had haemophilia A with inhibitors, following a severe haemorrhage. In 1974, when he was just 17 years old, Terkel was taken to the Haemophilia Centre of Bonn University Clinic for treatment following a massive bleed; his conditions were dire and his destiny seemed set to follow that of his brother, when the brilliant intuition of Prof. Hans-Hermann Brackmann changed his life and that of many other patients who have fought the same battle ever since.
During a recent interval at the “Haemophilia, the certainty of treatment” event, held in Trieste last June, Prof. Brackmann explained that he drew inspiration from allergy treatment to develop a strategy able to counter inhibitors, namely what we now know as the ITI protocol.
The strategy proved to be successful and after 7 months of therapy the inhibitors had disappeared, bringing the boy huge health benefits. From that moment, Terkel gradually started to walk again and to live a far more than “normal” life; he decided to act as a spokesperson for all those who have to struggle with rare diseases every day, an unwavering commitment that, in 2003, led to his being elected President of Eurordis, an organisation that brings together over 70 advocacy groups for patients with rare diseases from all over Europe.
Thanks to the intuition and determination of Prof. Brackmann, all those haemophiliacs who have to deal with the presence of inhibitors can now nurture the hope of living an extraordinary life, just like that of Terkel Andersen.