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SO-LIFE...

Haemophilia is just one of many bleeding disorders seen and managed by those who work in haemophilia centres.

Platelet function disorders are a rare group of usually inherited abnormalities that impair the process of blood clotting and thus result in bleeding. With approximately 1500 people diagnosed and registered in the UK they are often misunderstood and sometimes poorly treated.

While some inherited platelet function disorders result only in mild bleeding others can be very rare conditions that cause major life-threatening bleeding. They may affect people of all ages. In childhood, they commonly cause nose and mouth bleeding as well as bruising from minor trauma. In older girls and young women these disorders may result in heavy periods, which can have a major impact on quality of life and may impact on fertility and reproductive choices.

Through the Study Of LIving with a platelet Function disordEr (SO-LIFE) study, Haemnet is trying to find out what’s it like to live with a platelet function disorder.

We are inviting children and young people with a variety of these disorders to come along to our workshops to tell us their stories.

By gaining a better understanding of the needs of these patients, we hope that we can ensure that specialist services provide the right kind of support to patients and their families.

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