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Rare bleeding disorders

Bleeding disorders are conditions where the blood fails to clot properly. They are rare and nearly always inherited. Most are caused by blood-clotting factor that doesn’t work properly or is missing altogether. There are also conditions caused by a problem with the platelets – small cells in the blood involved in clotting.

Each related bleeding disorder is named after the clotting factor that is lacking. There are many different types of bleeding disorders because there are many different proteins (factors) involved in the normal blood clotting, which can have a reduced number, not work properly or both.

What causes a bleeding disorder?

Bleeding disorders are generally inherited, meaning they are passed from parent to child in their genes, so you would have the condition from birth. There are some bleeding disorders that you can develop later in life because of another illness or condition, but these are quite rare. These are known as acquired bleeding disorders.  

There are five possible situations that can arise with parents passing on a clotting factor gene or platelet fault:

  • one parent is a carrier and the other has ‘normal’ genes
  • both parents are carriers
  • one parent has the condition and the other has ‘normal’ genes
  • one parent has the condition and the other is a carrier 
  • both parents have the condition 

General symptoms 

The symptoms will vary, depending on the exact type of bleeding disorder you have. But there are some symptoms that are common to all of them. You may: 

  • bruise easily 
  • have heavy, painful periods lasting longer than a week

There are other symptoms that don’t happen in all bleeding disorders but can in most. You may have bleeding:

  • into joints
  • into muscles
  • for long than normal after minor or major surgery
  • after dental work

Being diagnosed with a bleeding disorder 

Depending on the type of bleeding disorder and your family history, you may know you have one from birth, or you may be diagnosed as a young child. 

Some bleeding disorders can have mild symptoms, or no symptoms at all.  So you may not find out until you are an adult, perhaps after having abnormally heavy bleeding when you have a tooth out or after having an operation.  It is usual to do blood tests before surgery these days, so it may be picked up during routine pre-surgical screening.  

You will need to have blood tests to get a firm diagnosis of a bleeding disorder. These are not generally routine tests and may have to be carried out in a specialist centre. You may also have to have a genetic test to look for the exact mutation in your genes that is causing the condition.  

Treating a bleeding disorder

There are many different types of treatment for rare bleeding disorders. Which is appropriate for you will depend on the disorder you have.  

You can find more details on bleeding disorder in our Rare diseases booklet and accompanying fact sheets –

Rare Bleeding Disorders booklet

Bernard-Soulier syndrome

Fibrinogen (factor I) deficiency

Factor II deficiency

Factor V & Factor VIII combined deficiency 

Combined II, VII, IX and X deficiency 

Factor V deficiency 

Factor VII deficiency 

Factor X deficiency 

Factor XI deficiency 

Factor XIII deficiency 

Glanzmann Thrombasthenia