Living with haemophilia is not a life sentence

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.” Over six decades later, Heinz has experienced major advances in treatment and now feels free to enjoy an active and independent lifestyle. Now with increased factor portability Heinz can travel, something he struggled to do in his youth. A haemophilia diagnosis for you or a loved one might feel overwhelming but ensuring timely treatment and care can provide real benefits and improve various outcomes.¹

 


Published 3 May 2019 | 3 min read
 


 

Heinz tells his story of living his life with Haemophilia and sharing insights of how the Haemophilia care changed in the last 60 years.

Effective treatments make living well a reality

In fact, awareness of and access to the right treatment are some of the best ways to help manage living with haemophilia. Brian is one of many patients who was initially daunted by the lack of information around his condition — now he actively advocates support for the 400,000+ people around the world living with haemophilia.² Like Brian, our goal is to raise awareness of haemophilia to help people spot the signs and ask for help.

 

In this video within the "Inspiring Change in Haemophilia" film series is featuring Brian, a FXlll deficiency patient. He is sharing his personal story and raises awareness for this rare bleeding disorder.

Treat your symptoms promptly

There’s now a variety of effective treatments that can prevent a bleeding episode or quickly treat bleeding if it does happen.³-⁵ Current World Federation of Hemophilia guidelines recommend treating bleeding within 2 hours of it happening.⁶ This is important, especially when it comes to internal bleeding in the joints. The earlier you treat joint bleeding, the better your chances of preventing further joint damage and other chronic conditions such as arthritis.⁷

hands holding globe - drawing

Staying active can help prevent bleeds

For seven-year-old Harry, treatment recommendations are very different from the experiences Heinz had. For one, it is now recognised that staying active can actually help prevent bleeds.⁸ Harry’s mum, Olivia, makes sure that Harry lives an active, healthy lifestyle, playing the sports he loves. Along with the support from numerous online haemophilia groups and communities⁹, Olivia, is looking forward to the future; “Harry can pretty much achieve anything he wanted to do.”

Heinz with haemophilia A in his garden


Heinz has experienced major advances in treatment and now feels free to enjoy an active and independent lifestyle.

With the right treatment, children born today with haemophilia can look forward to living a normal life⁸ like their friends and need not feel limited joining in school and social activities. We want to ensure that every child living with haemophilia receives a proper diagnosis and timely access to the right treatment.

 

Diagnosed very early in his life, Harry and his mum Olivia share their experience from a patient perspective as well as from a carer's perspective.


References

  1. Saxena K. J Blood Med 2013; 4: 49–56.
  2. National Hemophilia Foundation.
    Fast Facts https://www.hemophilia.org/About-Us/Fast-Facts [Accessed February 2019].
  3. 3. World Federation of Hemophilia. Treatment https://www.wfh.org/en/page.aspx?pid=642 [Accessed February 2019].
  4. NHS. Haemophilia treatment https://www.nhs.uk/conditions/haemophilia/treatment/ [Accessed February 2019].
  5. Hanley J et al. Haemophilia 2017; 23: 511‒ 520.
  6. Srivastava SA et al. Haemophilia 2013; 19(1): e1–47.
  7. Living with Hemophilia. Joint disease https://www.livingwithhemophilia.ca/managing/joint-disease.php [Accessed February 2019].
  8. World Federation of Hemophilia. Frequently asked questions https://www.wfh.org/en/sslpage.aspx?pid=637#Where_occur [Accessed February 2019].
  9. World Federation of Hemophilia. Search the Global Treatment Centre Directory https://www.wfh.org/en/page.aspx?pid=1264 [Accessed April 2019].