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Carl lives in Denmark and has Hemophilia A

What to expect following a diagnosis

If you have found out your child has hemophilia you may be struggling with a range of emotions and potentially a little overwhelmed from all of the information you have received. This page has been designed to act as a guide for you, providing information on looking out for a bleed, to finding other parents and support groups. Remember, you are not alone. While internal bleeding is trickier to detect than external bleeding - such as bleeding from cuts, nosebleeds or mouth bleeds - it’s critical to be aware of the signs and symptoms.

Signs of a joint bleed

  • Child may complain that the joint feels unusual
  • Parents may notice a child’s reluctance to use the affected arm or leg
  • Pain that typically gets worse the longer the bleed is untreated
  • Limited joint mobility
  • Swelling and warmer skin around the joint
  • Tingling or bubbling feeling in the joint

Signs of a muscle bleed

  • Pain or aching in the muscle (pain in the hip, groin, stomach, buttocks or lower back is a possible sign of a pelvic muscle bleed)
  • Unwillingness to use the affected arm or leg
  • Limping
  • Tightness in the muscle even when it’s not in use
  • Swelling
  • Warm skin around the bleeding site
  • Numbness or tingling in the leg or arm like it has “gone to sleep,” a result of pressure on a nerve
  • Veins in the arms or legs look larger than normal

Signs of a head bleed

  • Prolonged headache
  • Dizziness
  • Low energy
  • Slurred speech
  • Irritability
  • Difficulty waking up
  • Blurry or double vision
  • Difficulty walking straight or stumbling
  • Sudden onset of vomiting without stomach distress
  • Seizures

Looking out for signs of a bleed in a young child or baby

  • Young children may have bleeding from their mouth when their teeth start coming through, or if they bite their tongue or mouth
  • Toddlers may experience bleeding into their muscles and joints. Signs include pain, swelling, loss of range of motion and an inability to move or use the affected arm or leg. Usually there is no bruising or discoloration of the skin to indicate that the swelling and pain are due to blood
  • Some babies may experience bruising when being picked up or strapped into car seats

If you are ever concerned about a potential bleed in a child, always seek medical attention.


National Hemophilia foundation, Haemaware, Do You Know the Signs of These 6 Types of Bleeds. 2020.  Available from https://hemaware.org/bleeding-disorders-z/do-you-know-signs-these-6-types-bleeds Last Accessed January 2021. 

National Hemophilia foundation, Caring for your child with hemophilia.

World Federation of Hemophilia: Inherited Bleeding Disorders, 2020. Available from https://elearning.wfh.org/elearning-centres/inherited-bleeding-disorders/#bleeding_disorders[Last Accessed January 2021]

Peyvandi F, et al. J Thromb Haemost. 2016;14:2095-2106



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