Having haemophilia with inhibitors often strongly influences professional life and career choices. Here are some considerations that may help to navigate these aspects of your life.
When you consider your professional options, it is important to be aware of your current condition, joint status and limitations you may have in the future. Try to choose a profession that will not involve too much physical activity, which may put you at risk.
Project into the future! Keep in mind that you should be able to do the same job throughout the different stages of your life and at different ages. Try to avoid professions where you need to stand for a long time or travel a lot.
When choosing a university to study at, pay attention to whether the facilities are haemo-friendly in terms of accessibility and mobility.
Make sure you know where the nearest Haemophilia Treatment Center is when you move to go to a university – it is important that your educational facility is within close range of your treatment centre. Make a visit to the HTC beforehand to introduce yourself and get to know your doctor.
During your time at the university, you should be able to take care of yourself and be independent. Try to find the best way for you to manage your new way of life and still maintain good adherence to your treatment. Have someone who really understands your condition, perhaps your best friend, so that you have someone to call when there is an emergency or you need help. You are away from home but you still need to rely on people. Do not forget that!
Speak with your professors in the very beginning of the studies and explain your condition. It is important that you inform them that you might experience bleeding during the semester and so you might be absent for some days. This way, they will have more understanding and allow you to take exams later. You can use the fact sheet about haemophilia with inhibitors to help you.
It is a great dilemma whether you should tell your employer about haemophilia right away. Really, there is not one answer. It will depend on a variety of factors, e.g. the type of work you are doing, your condition etc., as well as how your work will be affected.
If you have a target joint and you experience frequent bleeding, it is better to be open about your situation from the beginning, so that your employer and/or management know what to expect. If you do not expect frequent absences, you can choose to inform them later.
There should be someone at the workplace who is informed about and understands your condition. Choose this person carefully as this is a sensitive private issue and it might require some time explaining what the condition means for you.
There will be times when you will have to take time off work for doctor appointments. Speak with your employer and/or management to see if they are flexible enough to be okay with this. Choose your job based on the understanding that they have and the benefits you can get, such as a flexible job position, better health insurance, etc.
The key is to find a balance between a career that you enjoy and the job that will not compromise your health.