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Gleb's Story

Several of Gleb's family members have hemophilia. Gleb was diagnosed with severe hemophilia A when he was only 7 months old, and severe hemophilia A with inhibitors when he was 14 months old. Spontaneous haemorrhages occured as a result of even the lightest physical activity - making life very difficult for his entire family.

 

Before diagnosis, Gleb fell one day and his family thought the resulting bruises would heal by themselves. Later they found out that the haemorrhaging was because of the hemophilia. Gleb suffered from bleeds every day which made life very difficult. Several different Factor VIII concentrates were used on-demand but nothing was successful. When Gleb was diagnosed with Factor VIII inhibitors at 14 months, treatment became more complicated and the injured target joint continued to cause problems.


On-demand treatment was continued with by-passing agents before doctors were able to initiate immune tolerance induction (ITI) treatment with Octapharma’s VWF/FVIII concentrate in January 2006.


The main problem with the treatment was bad venous access since injections had to be made twice a day. Gleb's family do not live in a big city and therefore had to visit a regional hospital where a port-a-cath was inserted.


At the beginning of treatment the inhibitor titre was at a level of 15 BU, but has decreased steadily since ITI was started. Treatment with the plasma derived VWF/FVIII concentrate was successful, and since February 2009, Gleb has continued with preventive treatment. Gleb has not experienced any severe bleeding episodes now for several years. He described his last bleed he had was several months ago, and he described it as only a slight discomfort in his joint. The doctors succeeded in healing his knee-joint.


Gleb attends school and if he misses lessons it’s more likely to be as a result of a head cold or other childhood illness just like other children. He plays football with his peers, swims, takes music lessons and plays chess. He also adores animals.


His favourite books are children’s books on biology. He has recently become interested in anatomy and one of his favourite toys is his “human body” set. Gleb is a robust and strong child and sometimes his family can hardly believe that he once had to lead such a sheltered and isolated life.

 

“Gleb has not experienced any severe bleeding episodes now for several years”