Ten things you need to know about inherited bleeding disorders

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1. Inherited bleeding disorders are lifelong conditions where your blood doesn’t clot properly, causing you to bleed longer.

2. All the bleeding disorders described in this handbook are caused by genes that are passed from parents to children (i.e. inherited). Sometimes they are diagnosed in an infant when there’s no known family history of bleeding.

3. Haemophilia is the most well-known type of bleeding disorder. Others include: von Willebrands, clotting factor deficiencies and platelet disorders.

4. The medical study of bleeding disorders is a branch of haematology and haemostasis. They are managed in NHS Haemophilia Comprehensive Care Centres or smaller Haemophilia Centres.

5. There are now good treatments for most bleeding disorders to help stop bleeding (on demand treatment). Regular continuous treatment (prophylaxis) can also protect you from future bleeds.

6. Your pattern of bleeding depends on the type of bleeding disorder. Surface (superficial) bleeds include cuts that bleed a lot after an accident, dental work or surgery, and gum and nose bleeds. Internal bleeds into the brain or stomach are very serious and can be life-threatening, whilst bleeds into joints and muscles are very painful and can cause swelling, bruising and long-term joint damage.

7. Females are just as likely to have a bleeding disorder gene as males, and face the extra challenges of heavy periods and bleeding after giving birth.

8. The word P.R.I.C.E. describes immediate first aid for bleeds into a joint or muscle (usually an elbow, knee or ankle): Protection, Rest, Ice, Compression, Elevation. Use treatment as quickly as possible.

9. Certain painkillers, particularly aspirin and ibuprofen, and a few other drugs, should be avoided.

10. With the treatment and care available in Scotland you can expect to lead a normal life and live as long as anyone without a bleeding disorder.