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 …
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 …
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 …
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, …
“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 …
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 …
Are we transforming transition?
My head is reeling from all of the bright ideas and madness floated at yesterday’s Transforming Transition workshop in Birmingham. Thanks to everyone who came along and shared so much good material on what was a really great day. Sharon Varney and Sandra Dodgson did a brilliant job designing the meeting – and I promise …
Marvellous nurses serve up bangers for cash
Last week, as the country was preparing for fireworks, Haemnet experienced a spectacular display of the innovative projects underway as part of the Roald Dahl Marvellous Children’s Charity’s latest programme. With funding from the Burdett Trust for Nursing, the “Marvellous Nurse Inventing Room” is allowing 12 projects to use the visual arts and technology as …
Physios say “get fit and active”
Jenna Reid writes … As a Physio working in haemophila I started to notice that a number of our “sporty” patients were less keen to stay active as they entered their teenage years. In an ever-changing world of social media and “gaming” it was becoming more and more difficult to persuade patients to stay fit …
Reflections on ISTH 2015
The XXV Congress of the International Society on Thrombosis and Haemostasis took place 20-25 June in Toronto. Over 7,000 people registered for numerous parallel sessions on bleeding and clotting – even the gorgeous sunny weather didn’t manage to stop hundreds attending every session. Between sessions the conference centre – three storeys underground – was like …