Listen to Jack's Story

Although Jack still has a high titre inhibitor, we feel very positive about the future as his level has been steadily falling since starting treatment with octanate®. Our quality of life has significantly improved and Jack's bleeding episodes are minimal.

Jack's Story

Jack was diagnosed with severe haemophilia A at birth via cord blood. He has a 13 year old brother, who also has haemophilia and a previous inhibitor his mother is a carrier.

 

Jack had his first ankle bleed at 11 months and was started on recombinant prophylaxis. A month after treatment was started he was found to have an inhibitor from a routine titre check measuring 4.8 BU.

 

Prophylaxis was stopped and a port-a-cath was inserted in January 2008 in view of starting immune tolerance induction (ITI) treatment. Port insertion was covered with recombinant Factor VII, and ITI commenced with recombinant Factor VIII in April 2008 once the inhibitor titre had reached a level of < 10 BU. However, even with high dose ITI, Jack’s inhibitor level continued to rise and he was experiencing bleeds around the port site requiring intermittent recombinant Factor VII. At its highest, the inhibitor titre was 1.208 BU.

 

A year after starting recombinant ITI treatment, Jack was switched to octanate® and his inhibitor titre has been steadily decreasing ever since. At the start of treatment with octanate® in April 2009, the titre was 861 BU but in January 2010, at a level of 54 BU.

 

Despite the challenges faced when living with an inhibitor, Jack is able to lead a 'normal' life. He goes to nursery, takes part in all activities with his peers and plays and fights with his siblings like any other 3 year old.