There are currently around 3,000 males across Australia and New Zealand who are living with haemophilia. (Women, who are genetic carriers of the disease, very rarely experience any of the condition’s symptoms.) "Haemophilia comes in several shades of gray, and not everyone who has the condition will be affected in the same way,” says Bartholomew J. Tortella, MD, Medical Director on Pfizer’s Haemophilia team.
That said, most boys and men with haemophilia, and those caring for them, will face similar challenges and concerns as they transition from one stage of life to another. Read on to learn how people with haemophilia and their parents and/or caregivers can make that path through life a bit smoother.
As a parent or caregiver of a child with haemophilia, you’ve likely learned a lot about the disease and how it will affect your child. But not everyone is as educated. It’s up to you to help the people involved in your child’s life to learn more about haemophilia and how they can help your son.
- Reassure others that haemophilia is not contagious. Yes, this may seem obvious to you, but it may not be to everyone. Stating this fact can also help start the conversation about haemophilia.
- Talk with your child’s caregivers and/or teachers about what they can do to help. They should know that a bleed will need to be treated right away and that they should call you right away.
- Explain to school staff and the parents of your son’s friends that they don’t need to be overprotective. “Children with haemophilia don’t bleed more rapidly than those without; they bleed longer.” says Dr. Tortella. You should explain which activities your child is allowed to participate in (swimming and biking, for example) and which should be avoided (football, hockey, and trampolines, to name a few).
- Provide caregivers and school staff with written information about your child’s haemophilia type, his factor deficiency, emergency contact information, and any prescribed treatments.
As your child gets older, he’ll gradually begin to take a more active role in the management of his condition. As his parent or caregiver, you should try to empower and enable him to do just that.
- Regularly remind your son that haemophilia does not need to define him. While there are clear rules that will need to be followed, it’s important that he is encouraged to explore his interests and hobbies.
- Encourage teens to gradually take charge of their healthcare. He should learn to recognise the signs and symptoms of a bleed, contact his healthcare team when appropriate, engage in appropriate physical activity to keep muscles flexible and joints strong, and understand the potential consequences of alcohol and drug use.
- Teach teens and college-age men to treat their condition regularly. “Some kids with haemophilia fall off the path during their teen years and only treat haemophilia when they have a bleed, rather than taking a dose prior to a planned activity like golf or tennis” according to Dr. Tortella. “Repetitive bleeding into joints can cause damage and lead to arthritis at an early age.”
Staying on Track
“People with haemophilia can and should live a relatively normal life,” says Dr. Tortella. In fact, men with haemophilia have a life expectancy almost equal to that of the general male population. Once someone with haemophilia begins caring for himself and possibly living on his own, though, it’s important that he continues to practice healthy habits.
- Getting and staying in shape is key. Exercise can promote healthy bones, joints, and muscles.
- Take an active role in your care by working with your healthcare team. You should also always have on hand the contact numbers and addresses for people, clinics, doctors and health centres that can help you in an emergency.