Haemophilia should be 'no barrier' to life, writes specialist nurse
A haemophilia nurse consultant has contributed to a unique new book about the personal experiences of people affected by bleeding disorders.
Chris Harrington, a haemophilia nurse consultant from the Royal Free Hospital in London, wrote the foreword to the book, which is called Buddies.
The book (see PDF attached, right) features nine different accounts of life with a bleeding disorder, including one from Paralympian athlete Jack Bridge.
It will be distributed to specialist NHS haemophilia centres across the country. It is also available free on request to anyone affected by a bleeding disorder, including the family and friends of individuals with the condition.
Ms Harrington said the Buddies book was a “great resource” for haemophilia specialist nurses to share with patients and their families.
In the book, she writes: “The stories here show that with the right treatment and support, emotional as well as practical, haemophilia is no barrier to a rich
and fulfilling life.
“We are given perspectives from different generations of people affected by haemophilia… They have faced challenges and gained confidence and a greater sense of control,” she said.
She added: “Of course vigilance and planning are required and special arrangements sometimes have to be made. However, these stories show us that a diagnosis of haemophilia need not impair a person’s quality of life.”
The book was produced with the support of the pharmaceutical company Novo Nordisk and launched following the publication of the first UK strategy on rare diseases in November.
Jamina Gibson, a senior product manager with Novo Nordisk UK, said: “It is great to have someone with Chris’s experience and insight providing the introduction.
“The stories within the Buddies book are truly inspiring, and we are very grateful to all the individuals and families who shared them with us to offer support to people affected, and to provide a valuable resource for health professionals caring for people with a bleeding disorder.”
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