What to expect following a diagnosis

If you have found out your child has haemophilia 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.

References

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

Talking to your healthcare team

Visiting your healthcare team can be daunting and you may feel overwhelmed. With that in mind, we have developed this short discussion guide.

Finding support

Since the diagnosis, you have probably been doing all you can to support your loved one. However, have you thought about yourself and looked for support?

The HERO Study

HERO (Haemophilia Experiences, Results and Opportunities) is an international, multifaceted initiative that aims to deepen understanding of life with haemophilia. Find out about some of the real world impacts.

<b>Changing Haemophilia<sup>®</sup> video library</b>

Changing Haemophilia^® video library

We found that sharing knowledge and the experiences of others can provide new information and perspectives. Find a number of videos that portray many stories.