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Haemophilia – all in the family

Meet two sisters, Julia and Rebecca. Their father Len has  haemophilia. Between the sisters they have four sons, all  toddlers – and three have haemophilia. 

“Haemophilia has always been a part of my life, and my family’s life – my dad Len has haemophilia and we grew up in an environment in which he chose not to let it dominate. Most of the time it didn’t alter his or our lifestyle choices, but the times he had a bad bleed it involved some real challenges for him and the rest of the family in managing the bleed and the subsequent recovery,” said Julia.

two women and their father in cycling gear

Julia’s boys are 4 and 2½ years old, both with moderately severe haemophilia. Rebecca has one son who is 31/2 years with severe haemophilia – but her youngest, who is not yet a year old, does not have haemophilia. Julia isn’t a  symptomatic carrier so never had bleeding issues, while Rebecca can remember she would always bruise easily, “but it was never a huge problem for me”. She was given some recombinant factor VIII (8) coverage for a knee reconstruction as a precaution. “A few days before my first day of Year 7, I had been jumping on my sister’s bed and banged my eyebrow really hard and got a bad black eye. By the time my first day of school came around the bruising had spread to the other eye, so I had two eyes in various colour shades. That was quite a challenge when I just wanted to blend in with the other kids!”  recalls Rebecca. 

Both girls were very open with their partners about haemophilia and their carrier status.  And both partners responded in a very positive way. “For us my carrier status was not really an issue,” said Julia.   They both had genetic counselling before starting a family and both had the view that the process was not too difficult.  “My Dad has always tried hard not to let haemophilia change his lifestyle and he has remained physically active. This was a great role model,” said Rebecca.

“I do recall a sense of shock when we found out our first baby had haemophilia,” said Julia. “But I think the real sense of shock came from finding out our baby’s factor levels: less than 1%. We’d been told factor levels generally ‘run true’ in a family, and my dad’s levels were 4-6%, but I knew that less than 1% was classified as ‘severe’ and was something altogether different to  ‘moderate’ haemophilia. However, since birth their levels have varied and in fact, we’ve been very pleasantly surprised – both by our first boy and our second, who was also diagnosed as moderately severe – at the relative infrequency of their bleeds and their ability so far to live like normal toddlers.” 

Rebecca had a similar experience of shock when finding out her son’s factor levels. “Having our first 

newborn was such a new experience, that this was just another thing in the mix to work out how to deal with (along with nappy changes, feeding etc etc!). Our short time living in the US with a child with haemophilia gave us a small insight into some of the challenges associated with health insurance coverage and the high cost of product. When our second son came back negative to haemophilia, it was a strange feeling. Of course we felt the relief that he wouldn’t have to deal with hospitals and needles and all the challenges along the way. However, it also felt a bit strange, as his big brother, two cousins and grandfather all have haemophilia, so in a way he’ll be the ‘odd one out’,” said Rebecca. 

**Editors Note (07/18) since this article was written the family have had another boy with haemophilia

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