Novo Nordisk’s commitment to address the unmet needs in haemophilia care, beyond medicine.
There may only be so many truly wonderful things in the world, but going on a journey to amazing destinations is definitely among them. Whether you’re living with haemophilia or not, the thrill of travel and exploration, of discovery and home-coming, is undeniable and universal.
It is easy to think of haemophilia as strictly a physical condition. On the surface, it involves bleeds, affects joints and often requires injections. While there is no doubt about the physical side of haemophilia in this blog post we are going to look at another, not-so-visible side of haemophilia: the pain it causes, and how that might cause mental health problems such as depression, anger and anxiety.
People living with haemophilia are prone to slow, steady and continuous bleeding after minor trauma – or after no trauma at all, in the case of severe haemophilia. The amount of clotting factor in the blood directly determines the seriousness of the condition. Almost all people with haemophilia are men, and just over one third of them have severe haemophilia.The rest have the mild or moderate type.
Over the past few months, the world has been hit by the global outbreak of a coronavirus disease (COVID-19). To contain the spread and prevent the overwhelming of health services, billions of people have been forced to stay home, working remotely or trying to stay stimulated in other ways.
Promising innovations. 50 years after her pioneering work in clotting factors, Professor Ulla Hedner still keeps a close eye on developments in haemophilia treatment. For Henning Stennicke, Corporate Project Vice President of Novo Nordisk, the impact of Professor Hedner’s work is still felt.
Scientific advances in our understanding of haemophilia have resulted in effective treatment for many, and the haemophilia care landscape has improved dramatically over the decades.
Professor Ulla Hedner’s pioneering haemophilia research helped to save Johann’s life in 1981 by staunching serious bleeds as he lost his milk teeth.¹,² Indeed, Professor Hedner’s work eventually led to the development of a synthetic form of Factor VIIa.
As the congress draws to a close I have continued to learn and celebrate haematology. I am very grateful I was able to experience this amazing international congress in my home country, proud of my colleagues for all their innovative work, and thankful for the opportunity to blog and share my journey!
Day 2 got off to a racing start, with a chilly early-morning charity fun run. With the goal of raising funds and awareness for World Thrombosis Day, hundreds trekked to the Melbourne Botanical Gardens to enjoy a casual five kilometer walk or jog.
Wow! The last 24 hours have been fantastic. It is so exciting to see everyone here in Melbourne, Australia. With over 5000 registered attendees, this congress demonstrates the importance of coming together to share research and clinical experience, and the impact of this on careers and practice.
Professor Ulla Hedner, long-time pioneer of haemophilia treatment, has always been striving for better care for those affected by bleeding disorders. In the 1970s she was dismayed by the limited scope of treatment, hampered by limited understanding and progress.
When Heinz was diagnosed with severe haemophilia A at 14 months in the 1950s, his parents were told his life expectancy would be just 20 years old. “When I was young, there was no treatment at all.”
Welcome back to our Changing Haemophilia® blog! It’s April and we are celebrating World Hemophilia Day (WHD), organised by the World Federation of Hemophilia (WFH).
Haemophilia. What’s your first thought? Bleeding? This is one of the obvious signs of haemophilia but symptoms run a lot deeper than the bleeding that people can see. As haemophilia is a rare blood disorder, not everyone would really know a lot about it if they aren’t directly affected and there are a few misconceptions you may have come across.
Have you or a loved one been diagnosed with haemophilia?
Haemophilia is a relatively rare bleeding disorder. You may get as far as adulthood before mild (or very rarely, moderate) haemophilia is diagnosed. The discovery may have been through unrelated events such as a complication of surgery. Alternatively, the diagnosis may have come very early on in life.
Haemophilia affects approximately 1 in 10,000 people.¹ Yet, only 25% of the global patient population has been identified — and many are not receiving adequate care.¹ ² We at Novo Nordisk are proud to support the NNHF and its vision that “all people with haemophilia or allied bleeding disorders receive care and treatment wherever they live”. Since 2005 the NNHF has supported 237 programmes and 18 awards, creating sustainable impact in 70 countries.² ³
Obesity is an increasing issue both in the general population and amongst people with haemophilia — 50% of whom are now estimated to be overweight or obese.¹ As well as the general health implications of obesity, such as cardiovascular risks, in people with haemophilia obesity can affect joint health too. There’s also the additional emotional burden of further chronic conditions to consider.
How does obesity impact people with haemophilia?
Obesity is an increasing issue within the general population, and it’s no different for the haemophilia community, roughly 50% of whom are estimated to have obesity.² ³ However, obesity can pose specific risks to people with haemophilia in addition to those it is known to cause in the general population (high blood pressure, diabetes, heart problems, etc.).
Haemophilia B is a genetic disorder caused by missing or defective clotting factor IX (FIX, or factor 9), causing prolonged and often spontaneous bleeding externally and internally, into the muscles and joints.¹ Haemophilia B makes up 15–20% of all haemophilia cases, and 60% of cases are genetically inherited.
Haemophilia is unpredictable and it is important to remain vigilant when monitoring the disease. The World Federation of Haemophilia recommends that a bleed should be treated as quickly as possible, preferably within two hours.¹ So how can we make sure that we are ready to treat within this short window of time? A key is being able to spot the signs and symptoms, especially the early ones.
Welcome back to the Changing Haemophilia blog! This month we are talking about bleeding episodes and how to make sure we are properly prepared for a bleed so that we can treat it — FAST! Bleeds can often be unexpected and catch us unaware, so how can we make sure we are prepared? Firstly and most importantly, visit your HCP and ask them about the correct way to be prepared.