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Volume 2 (2015): Issue 2

The modern challenges of haemophilia care in childhood and adolescence

Abstract

Abstract

Modern haemophilia care based on good diagnosis and effective prophylaxis has allowed boys born with haemophilia to grow up leading essentially normal lives. Nevertheless, there remain challenges notably those posed by inhibitors and patient expectations. There is now a significant cohort of men in their 30s, 40s and 50s who have been looked after extremely well but many of whom now have significant ankle arthropathy because they played football, even when advised not to do so at a time when prophylaxis was limited or started late. The imminent era of longer-acting clotting factors and gene therapy will also impact on future patient expectations. Meeting and managing these challenges will be much enhanced by the development and maintenance of good relationships between the patient and the haemophilia team.

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References

  • 1. Gregory M, Boddington P, Dimond R, et al. Communicating about haemophilia within the family: the importance of context and of experience. Haemophilia 2007; 13(2): 189-98.
  • 2. Britten MI, Spooner RJD, Dormandy KM, Biggs R. The haemophiliac boy in school. Br Med J 1966; 2(5507): 224.
  • 3. Le Quesne B, Britten MI, Maragaki C, Dormandy KM. Home treatment for patients with haemophilia. Lancet 1974; 2(7879): 507-9.

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Authors

  • Mary Mathias

    Mary.Mathias@gosh.nhs.uk
    Consultant Haematologist, Royal Free Hospital and Great Ormond Street Hospital, London, UK
  • Debra Pollard

    debra.pollard@nhs.net
    Lead Nurse, Katharine Dormandy Haemophilia Centre & Thrombosis Unit, the Royal Free Hospital, London, UK