Whether you or someone in your life has just been diagnosed with haemophilia, or was diagnosed a while ago, you probably have some questions about the impact the condition might have at school and work. Here we provide answers to some frequently asked questions that you may find helpful.
What will I need to do when my child starts school?
When your child starts school, it will be important to educate teachers on how to care for a child with a bleeding disorder, and to ensure that your child receives any additional support or special consideration that may be required.
Your Haemophilia Treatment Centre can help you with this and, if necessary, a member of the team may be able to visit your child’s school to provide information and guidance to staff. You can also recommend that your child’s teachers read Haemophilia Information for Schools – An Information Kit for Teachers developed by the Haemophilia Foundation Victoria.
Do I need to tell people at school about my condition?
Deciding whether to share information about your haemophilia with others at school is an important consideration that you and your family will need to think about. Everyone is different and while some people may be very open about their condition, others are more private and may not be comfortable with disclosing this information to their friends and classmates.
Either way, it’s important that everyone respects your decisions regarding whether you choose to tell your friends and classmates about your condition. However, you should remember that there are certain people who will need to know that you have haemophilia so that they can assist you where necessary. This includes your teachers and the school nurse (if you have one).
If you have any questions about disclosing to others that you have haemophilia, your Haemophilia Treatment Centre should be able to assist you.
What if my child experiences discrimination at school?
Everyone has the right to be treated fairly and with respect, regardless of whether or not they have a chronic disease. In Australia, your child’s right to a proper education is protected under the Disability Discrimination Act and the Disability Standards for Education made under the Act.
As a parent, you are in the best position to advocate for your child and ensure that they are not discriminated against. While every situation is different, outlining your concerns to those involved or the School Principal may be sufficient to resolve the situation. However, if the issue cannot be directly resolved, you can contact the Australian Human Rights Commission, who handle complaints of disability discrimination made under the Disability Discrimination Act. You can find more information at their website.
What can you do if your child is the victim of bullying?
Bullying can happen to anyone at any time – and this includes children with haemophilia. It is a serious issue that can have damaging consequences, both physically and emotionally, and should never be tolerated as a ‘normal part of growing up’.
It is important that you maintain an open dialogue with your child about bullying. This way they should feel comfortable coming to you for support. Be calm and reassuring, and try to educate them on what to do when bullying occurs. You may also like to share any experiences you’ve had with bullying in the past.
It’s also important to consider contacting your child’s teacher about the situation. Bullying can have damaging consequences and the school should take the matter seriously. You can also contact your Haemophilia Treatment Centre for additional support and guidance, or visit the Bullying. No Way! website.
What do I need to consider when choosing a career?
Choosing your future career is one of the biggest decisions you will probably make in your life. Obviously it requires a lot of thought – and this is especially the case for people with haemophilia. The key goal should be finding a career that is both fulfilling and supports your health over the long term.
When choosing a career, you will probably need to consider factors such as whether there are any special medical requirements, how physically demanding the job is, whether it will require you to travel, and how flexible the work environment will be.
Your Haemophilia Treatment Centre should be able to provide guidance as to whether the careers that you are interested in pursuing will support your health over the long term.
Do I need to tell people at work about my condition?
Depending on what you do for a living, the decision to tell your workmates about your condition is likely to be up to you. And if your bleeding disorder is not going to impact on your work, you may want to take your time and think carefully before you tell your manager or colleagues. Ultimately, you probably need to think about whether telling people about your condition will make your life easier or more difficult.
Your Haemophilia Treatment Centre can help you decide whether disclosing your condition at work is the best option for you. If you do decide to go ahead with this, they can also assist in providing information about your condition to your manager and/or colleagues.
Where can I access more support?
Although you or your loved one has a rare condition, it’s important to remember that you are not alone. There are many families in Australia, just like yours, who are dealing with the effects of haemophilia. You might like to ask your Haemophilia Treatment Centre whether they can put you in contact with other people in your local area who are going through similar experiences.
As a parent, you are in the best position to advocate for your child and ensure that they are not discriminated against.