Haemophilia: a mother’s guilt
‘Building a family of support’ is the theme for World Haemophilia month in April.
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April is World Haemophilia month. Every year in April, the world stands together in effort to raise awareness of haemophilia and other inherited bleeding disorders. This is a critical effort with an ultimate goal of ensuring better diagnosis and access to care for the millions who have a rare bleeding disorder yet remain without treatment. The theme for this year’s commemoration is “Building a Family of Support”.

“This year we’re calling on our South African family to come together to talk and learn about a disease that most sufferers don’t get treatment for. The more people who get involved and show their support, the better our chances of improving diagnosis and access to quality care for all,” says Professor Johnny Mahlangu, Director of Haemophilia Comprehensive Care Centre at Charlotte Maxeke Hospital.

It is a little-known fact that 1 in 10,000 people are born with haemophilia A, and about 1 in 50,000 people is born with haemophilia B1. This inherited condition, which usually only presents in males, compromises the inability of the blood to clot, and can result in excessive bleeding after an injury or surgery, or even in spontaneous bleeds.  

When moms feel guilty

Haemophilia is a genetic disorder passed on by female carriers to their male children, who may or may not inherit the condition. Similarly, their female children may or may not become carriers or develop symptoms themselves, which is a rare occurrence in women and girls. This, in turn, can lead to immense guilt in moms who pass on the genetic disorder.

These and many other factors make haemophilia a complex condition, so it is not surprising that the general populations’ understanding of it remains extremely limited. An estimated 75% of those living with the condition are in developing countries, and receive inadequate treatment or no treatment at all, largely due to lack of awareness the causes, symptoms and management options2.

 “Advances in treatment however have ensured that  people living with haemophilia, can live perfectly normal lives with a life expectancy of  10 years less than that of males without haemophilia, while children who receive proper treatment can look forward to a normal life expectancy”, says Dr. Lindiwe Pemba, Medical Head of Medical Information at Novo Nordisk.

“We are dedicated to changing possibilities for people living with haemophilia.  Every step of our journey is focused on improving treatment options, providing better access to care, and understanding the needs of haemophilia patients”, says Dr Pemba.

5 Facts about Haemophilia

•    The most severe forms of Haemophilia affect almost only males. Women can be seriously affected only if the father has Haemophilia and the mother is a carrier, which is extremely rare.
•    Haemophiliacs can’t stop bleeding due to the lack of an essential protein that allows blood to clot normally.
•    Symptoms of the disease include: big bruises; bleeding into muscles and joints; spontaneous internal bleeding; prolonged bleeding after an injury or operation.
•    Treatment of the disease involves replacement therapy – the substitution of the missing clotting factor.
•    There is no cure for haemophilia but gene therapy remains an exciting possibility for a partial or complete cure.

For further information on haemophilia and treatment options for people living with the condition, visit www.novonodisk.com

To learn more about Haemophilia visit:

South African Haemophilia Foundation

  
World Federation of Haemophilia’s website

Shared with Parent24 via Novo Nordisk.

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