Tatiana Bathfield
Secretary
Haemophilia Association of Mauritius
(+230 52 52 44 22)
Saturday, 10th of August, 2024 saw Edouard Lagesse complete an immense physical and mental challenge in support of the Haemophilia Association of Mauritius (HAM).
Edouard took off on the 1st of July 2024 with the aim of completing four different GR (Grande Randonnée) trails in France in approximately two months. This challenge would cover a total distance of approximately 756 km and a cumulative elevation gain of 28,750 meters all in self-sufficiency. Edouard’s goal, through this challenge, was to raise funds for HAM, but more importantly, to create awareness and improve the diagnosis and management of women and girls suffering from bleeding disorders in Mauritius.
The Haemophilia Association of Mauritius, founded in 2008, is an NGO working on a national scale to improve and sustain the treatment of people with haemophilia and other inherited bleeding disorders. Haemophilia, although rare, is one of the most common bleeding disorders, in which the blood does not clot properly. Internal bleeding can be a severe life-threatening condition, leading to tissue, joint, and organ damage.
Bleeding disorders, such as von Willebrand disease (VWD), haemophilia, and platelet function disorders, can affect anyone, but women and girls often face unique challenges due to menstrual and reproductive health issues. Misdiagnosis or delayed diagnosis can lead to severe complications, including anaemia, haemorrhage, and compromised reproductive health.
The importance of Edouard’s challenge was to shed some light on the fact that women can and DO have bleeding disorders. For many years, people believed that only men and boys could have symptoms of haemophilia, such as bleeding in general and bleeding into joints, and that women who “carry” the haemophilia gene do not experience bleeding symptoms themselves. Historically, these disorders have been perceived as rare in females, leading to gaps in research, diagnosis, and treatment.
We now know that many women and girls do experience symptoms of haemophilia. As our knowledge about the disorder has increased, so has our understanding of why and how women can be affected. Some women live with their symptoms for years without being diagnosed or even suspecting they have a bleeding disorder. This has a profoundly negative impact on their quality of life.
HAM has been, and continues, to advocate for the improved treatment and management of ALL those suffering from bleeding disorders in Mauritius. Through the Association’s advocacy efforts, significant progress has been made. Today, patients with Haemophilia and other bleeding disorders in Mauritius are able to receive clotting factor concentrate free of charge. This achievement is a testament to the Association’s commitment to ensuring that individuals with these conditions have access to the necessary treatment.
The Association however now faces a new challenge: this new project will address the significant gap in the diagnosis and management of bleeding disorders in women and girls. By developing standardized protocols, educating healthcare providers, and empowering patients, HAM aims to improve health outcomes and the quality of life for this underserved population.
Should you, or anyone you know, suffer from or are prone to the following symptoms, please reach out to the Association:
- Heavy menstrual
periods
o Bleeding for more than 7 days, from the time it began until it stopped
o Flooding or gushing of blood, limiting daily activities such as work, exercise or social activities
o Passing clots that are bigger than a quarter
o Changing tampon and/or pad every 2 hours or less on heaviest day
- Being told you are “low in iron” or have anemia
- Having bleeding symptoms and someone in your family has a bleeding disorder, such as von Willebrand disease, or a clotting factor deficiency, such as haemophilia
- Heavy bleeding from dental surgery, other surgery, or childbirth.
- Frequent nose bleeds that last longer than 10 minutes
- Bleeding from cuts lasting longer than 5 minutes
- Easy bruising (weekly, raised and larger than a quarter)
Lastly and more importantly, although Edouard has completed his challenge, you are still able to contribute to the online crowdfunding platform via Small Steps Matters: https://www.smallstepmatters.org/projets/climbing-for-a-cause-scaling-new-heights-to-support-women-and-girls-with-bleeding-disorders/
Disparities in healthcare for women and girls with bleeding disorders must end. Undiagnosed, untreated bleeding disorders in women and girls have medical consequences and unique issues at every life stage. By raising awareness and advocating for equal treatment, we can make a difference. Let’s close the gap and ensure they get the care they need!
