Aisha, living with beta thalassaemia major in the UK
Facing challenges at work or school
If you live with beta thalassaemia, you may have had to take time out of education or work for medical care. Or you may notice your condition has an impact on your life at school, college, university or work. Both can cause stress or anxiety.
You should have the same opportunities as everyone else during your education or at work, but you may need a little extra support. Remember, support is available to you wherever you learn or work. And by knowing what’s available, you can feel more confident about getting on with your education or job.
If you have a specific concern about school, college, university or work, you can find support groups and other support services near you that can help. Your local patient organisation might also be able to provide support and advice.
Getting a good start: support for school, college or university
It takes time and effort to manage your beta thalassaemia. And if you’re still at school or college, this may mean you miss out on things you would like to do.
People at school, college or university may not understand beta thalassaemia or the effect it can have on your life. But it’s important to always let them know what support you need to help lessen its effect on your education if you feel comfortable to do so. Get to know your rights now, so you can build the confidence to ask for support when you need it. This will make it easier to do the same when you go out into the workforce.
You might also find it helpful to ask your healthcare team to visit or contact your school, college or university to assess the medical facilities and food available.
For support at school, you can find a helpful school guidance resource to share with faculty and staff here.
Knowing your rights and getting the support you need
Whatever challenges you face, it can help to understand your rights and know what support you can ask for, so you can keep moving forward with your education and career.
Contact your specialist social worker and care team for resources and advice on the services you can access.
Find your path with your healthcare team
Whether you’re working or still in education, your healthcare team can support you to find ways of managing your physical health and your emotional wellbeing at work or in education. Together, you can find a way to balance managing your condition with getting the most out of your education or career.
Remember that you have rights at school, college, university and work. With the right support, you can pursue the career you choose and be successful – whatever success means to you.
Resource Hub
Our downloadable tools and guides will help you manage your life with beta thalassaemia
Find your path
