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Busting myths in haemophilia

There are many misconceptions about haemophilia. See the flashcards below to dispel some of the most common of these.

Myth

If a person with haemophilia gets cut, they will bleed to death.

Truth

Not every bleed is life-threatening. People with haemophilia may present with bruising, or bleeding into muscles and joints, which if frequent, is associated with long-term damage.1

Myth

People with haemophilia only experience external bleeds, e.g. from a cut or graze.

Truth

People with haemophilia can also have spontaneous bleeding internally. The knee, ankle and elbow joints are most often affected.2

Myth

People with haemophilia have a short life expectancy.

Truth

With proper management, people with haemophilia today can look forward to a near normal life expectancy.2

Myth

Haemophilia A can get better with time.

Truth

Haemophilia A is a chronic, lifelong bleeding disorder caused by a lack of clotting factor VIII, which generally does not change over time.2

Myth

Children with haemophilia always have a family history of haemophilia.

Truth

While haemophilia is usually inherited, it occurs spontaneously in one-third of cases.3

Myth

Haemophilia only affects boys or men.

Truth

As the gene for haemophilia is linked to the sex chromosome X, the majority of people with haemophilia are men. Haemophilia can occur in women, but is rare.4

Myth

Iron, certain vitamins and peanuts can cure haemophilia.

Truth

Today there is no cure for haemophilia.2 Current treatment includes replacement therapy of the missing clotting factor VIII.5

Myth

Everyone with haemophilia A experiences the same symptoms.

Truth

Symptoms of haemophilia A can vary depending on the level of factor VIII. It can be categorised as mild, moderate or severe.5

Myth

Everyone who has haemophilia is a direct descendant from the English Queen Victoria.

Truth

There are many different types of bleeding disorders.6 Queen Victoria was a carrier of haemophilia B, caused by a lack of a different clotting factor than haemophilia A.7

Myth

People with haemophilia cannot play sports.

Truth

With proper treatment, people with haemophilia can enjoy a wide variety of sports e.g. swimming and running – but rough contact sports are usually not advised.2

Myth

All forms of haemophilia involve a deficiency in clotting factor VIII.

Truth

Haemophilia A is the most common form and results from a lack of clotting factor VIII. Haemophilia B is due to a lack of factor IX and haemophilia C from a lack of factor XI.8

Myth

Everyone with haemophilia will eventually become disabled due to joint damage.

Truth

The good news is that with proper preventative (prophylactic) treatment, people with haemophilia may be able to avoid frequent joint bleeds and long-term joint damage.9

References

1. University of California San Francisco. Hemophilia Signs and Symptoms. [Online]. https://www.ucsfhealth.org/conditions/hemophilia/signs_and_symptoms.html. [Accessed March 2016].

2. World Federation of Hemophilia. About Bleeding Disorders, Hemophilia. [Online]. http://www.wfh.org/en/page.aspx?pid=637#Where_occur. [Accessed March 2016].

3. Haemophilia Foundation Australia. Haemophilia. [Online] https://www.haemophilia.org.au/documents/item/2040. [Accessed March 2016].

4. Centers for Disease Control and Prevention. Hemophilia Facts. [Online]. http://www.cdc.gov/ncbddd/hemophilia/facts.html. [Accessed March 2016].

5. WFH. Guidelines for the management of hemophilia. 2012. [Online]. http://www1.wfh.org/publications/files/pdf-1472.pdf. [Accessed March 2016].

6. National Hemophilia Foundation. Hemophilia A. [Online]. https://www.hemophilia.org/Bleeding-Disorders/Types-of-Bleeding-Disorders. [Accessed March 2016].

7. National Hemophilia Foundation. History of Bleeding Disorders. [Online]. https://www.hemophilia.org/Bleeding-Disorders/History-of-Bleeding-Disorders. [Accessed March 2016].

8. Hemophilia Information. Types of Hemophilia and other bleeding disorders. [Online]. http://www.hemophilia-information.com/types-of-hemophilia.html. [Accessed March 2016].

9. Nisson M, Berntorp E et al. Twenty-five years' experience of prophylactic treatment in severe haemophilia A and B. Journal of Medicine. 1192; 232(1):25-32.