Citation
J Haem Pract 2015; 2(2):14-16. doi: 10.17225/jhp00053

Authors: Mary Matthias, Debra Pollard

Mary Matthias
Consultant Haematologist
Royal Free Hospital, Pond St, London NW3 2QG, UK. Great Ormond Street Hospital NHS Foundation Trust, Great Ormond St, London WC1N 3JH, UK. Email: Mary.Mathias@gosh.nhs.uk

Debra Pollard
Lead Nurse
Katharine Dormandy Haemophilia Centre & Thrombosis Unit, Ground floor, Royal Free Hospital, Pond Street, London, NW3 2QG, UK. Email: debra.pollard@nhs.net

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.

References

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  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.

The Journal of Haemophilia Practice is published by Haemnet.

Haemnet is a registered charity that brings together and gives a voice to haemophilia nurses, physiotherapists and allied health care professionals, providing forums for collaborative research, educational activities and support.