Haemophilia

Haemophilia is a lifelong bleeding disorder that affects the blood's ability to clot. It is a condition that is usually inherited.

In haemophilia, the blood clotting process doesn’t work properly. Their blood does not have enough clotting factor. As a result, people with hemophilia can take longer than normal for bleeding to stop. They may have bleeding into joints, muscles, or other parts of their bodies without having had an injury. 

The content on this page is provided solely for information purposes and provides an overview of the subject matter covered. It is not a substitute for professional medical advice, diagnosis or treatment. If you think you have haemophilia, please seek further information. The information on this page is subject to change without notice.

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Haemophilia is an invisible disability

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Haemophilia is a rare condition that mainly affects males, but females can also be affected with haemophilia. Although haemophilia is usually inherited, it can sometimes occur when there is no family history of it.

There are two types of haemophilia. Both types have the same symptoms and are inherited in the same way:

• Haemophilia A is the most common and the person does not have enough clotting factor VIII. Around 1 in 10,000 people are born with it.
• Haemophilia B is when the person does not have enough clotting factor IX. It is less common with around 1 in 50,000 people born with it.

Symptoms

People with haemophilia bleed for a longer time than normal and can bleed inside or outside the body. These bleeding episodes may occur spontaneously, without an obvious cause, or as a result of trauma or injury. Most often bleeding occurs internally, usually into the joints or muscles. Repeated bleeding into the same joint can cause permanent damage such as arthritis, chronic pain and joint damage requiring surgery.

Symptoms can vary in intensity depending on how the condition affects people and on the clotting factors present. Symptoms include:

Symptoms are variable and broad and can include a combination of:

• nosebleeds that take a long time to stop
• bleeding from wounds that lasts a long time
• bleeding gums
• skin that bruises easily
• pain and stiffness and difficulty using a joints, such as elbows, as a result of bleeding inside the body (internal bleeding)
• prolonged bleeding after getting a cut, removing a tooth, or having surgery

There is no cure for haemophilia but with an adequate quantity of treatment products and proper care, people with haemophilia can live perfectly healthy lives.

Treatment for haemophilia today is very effective. The missing clotting factor is injected into the bloodstream using a needle. Bleeding stops when enough clotting factor reaches the spot that is bleeding.

Effects on and barriers faced in daily life

• General lack of understanding or awareness about haemophilia
• Many myths and misconceptions about haemophilia exist
• Difficulty in fulfilling work and social commitments
• Pain, injury and hospital appointments can have a onsiderable impact on day-to-day life including working lives, childcare, everyday tasks and social lives
• Concern about school, job and employment prospects as a result of having haemophilia
• Discrimination in the workplace

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Assistance and support you can offer

Every non-visible condition and impairment is experienced differently, and it is not possible to generalise the recommendations below for all. 

• find out about haemophilia and be aware of what the symptoms may be
• do not make assumptions about how haemophilia affects someone - find out from them how you can support them
• be aware that the person with haemophilia may need to re-arrange or cancel plans depending on their symptoms

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Sources:

NHS: https://www.nhs.uk/conditions/haemophilia/
Haemophilia Foundation Australia: https://www.haemophilia.org.au/
The Haemophilia Society: https://haemophilia.org.uk/
WFH: https://wfh.org/find-local-support/ 
HR Zone: https://www.hrzone.com/perform/people/whats-the-answer-working-with-haemophiliacs 

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