Month: December 2015

December 7, 2015
SIPPET study poses questions for PUPs policy

Kate Khair writes… Treating previously untreated patients (PUPs) with haemophilia A with recombinant factor VIII (rFVIII) results in a higher incidence of inhibitors than treating with plasma-derived factor VIII (pdFVIII) containing von Willebrand factor. Results of the international, randomised controlled SIPPET (Survey of Inhibitors in Plasma-Products Exposed Toddlers) study were presented last week at the …

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December 6, 2015
Awareness rising, testing possible … now for the politics

Saturday was patient camp day and the day on which those people tested yesterday would receive their diagnoses. After negotiating the morning traffic, we arrived at the Pope Paul VI memorial Hotel (“no firearms inside”), where those who came from out of town had spent the night. Agnes and the Haemophilia Foundation of Uganda team …

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December 4, 2015
It’s screening day – so why are there goats?

Well, it’s not everyday you stroll around the grounds of a national teaching hospital and encounter a herd of goats. Just another day in Mulago. As Jemma said, “No-one should ever complain about the NHS.” Patient-testing day started out as a testing day for us all. We were not quite sure how many would turn …

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December 3, 2015
On the road to coordinated haemophilia care – in African time

Despite the best attempts at planning, everything in Uganda runs to Africa time. Especially when it rains. The first training workshop of the GOSH/Mulago twinning programme was scheduled to start at 8.30am. By 9.30am we had 7 of around 40 expected delegates who spontaneously filled seats from the front of the room (unlike HNA meetings, …

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December 2, 2015
“They just want to go to school and be pain free”

Tuesday mid-morning we headed out of Kampala to meet a family with three boys with haemophilia. Agnes had first spoken to them since last year and was keen to encourage them to come to Friday’s screening event and needed to arrange their transport. They live around 190 km south west of the capital; what with …

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December 1, 2015
Uganda opens its eyes to haemophilia care

Driving in from Entebbe to Kampala, you learn very quickly to keep your eyes closed. It’s a free for all, with cars coming from every direction. Very “Game of Thrones”. Walking into the paediatric department of Mulago Hospital there’s the same sense of controlled chaos and a similar urge to keep “eyes wide shut”. London’s …

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