The M3 Blog team spoke to six people living with haemophilia in the UK and the US, two of them the mothers of young boys with the condition, to understand their challenges, fears, their relationship with healthcare professionals and the treatments they are experiencing. The stories they’ve shared show more than that, they are about acceptance and hope.
The interviewees represented a wide cross-section of different ages and different types of haemophilia and degree of severity, which means treatment and perception of the condition are also different. Almost all of them were diagnosed at birth or whilst they were still very young, and some have very early memories of it: “My earliest memory was when I was about three years old and had bleeding to the joint in my knee and was admitted to hospital”, shared ‘FK’, also 45, from Birmingham. He has severe haemophilia A.
To some, haemophilia has affected their lives significantly. ‘LM’, the mother of a 12-year-old boy with moderate haemophilia A and inhibitors, described how his condition has had a massive impact on him and on their family. Not only does he have to inject himself every morning before school, in the last six or seven months they have been to over 40 hospital appointments, not including A&E visits or admissions. ‘LM’ also shared interesting insights on being a mother of a boy with haemophilia: “There are so many different phases: when he was thrashing around in his cot I’d worry about him bruising his arms, then when he was starting to walk I was worried about him falling over. Now he walks to school on his own and you worry about that. Soon it will be the teenage years when he will be out and about on his own more. Every age brings its own challenges”.
For ‘DB’, ‘a 45-year-old man with severe haemophilia B from Hitchin, UK, it was particularly difficult when at 19 he contracted hepatitis C through a blood transfusion, amidst what is now known as the contaminated blood scandal from 1970s and 80s. On the other hand, he said haemophilia hasn’t impacted his life negatively on the whole. As he couldn’t play rugby and football when he was younger, it meant that he concentrated on arts. He learnt to play the drums, guitar, sing and to act, skills that have shaped his social life ever since. “I don’t think that I would have acted or played music if I didn’t have haemophilia”, he reflected.
According to ‘KT’, a 57-year-old male from Utah, US, with mild haemophilia A, haemophilia hasn’t really stopped him from doing the things he wants to do, he just suffers the consequences more. “I have to be cautious of cuts and bruising even as mild as I am. I have joint problems based on bleeding which make some basic tasks difficult”, he explained.
In a similar way, ‘LOSP’, a 35-year-old with mild haemophilia A who lives in London, told us he feels haemophilia is part of who he is and that he tries to manage his condition by avoiding injury and looking after himself, taking injections only when he has to.
Everyone we spoke to said they have a very good relationship with their physicians and nurses. The ones living in the UK praised the NHS staff and the support from haemophilia centres in general.
‘A’, also from London, takes care of her 9-year-old son with severe haemophilia A. He’s been on a global trial for 6 months now, and according to her for her son the results have been great. “He’s had no bleeds at all. His factor level has moved from 1% to 7-8% which is a move from severe to mild, and so far the trial has been really good – the medication is a factor VIII substitute so is being trialled with patients with inhibitors. It’s helped his confidence so much so far”.
Gene therapy seems to be the hope for most of the people who have shared their stories with us. Despite different levels of severity and success of treatments, the possibility of leading a “normal” life is a prospect they all look forward to – for themselves and future generations.
To read each interview in full, please click on the links below: