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Djena looks ahead with a smile. Renna smiles in the background.

Support in the workplace

ON THIS PAGE:
Support in the workplace
Support from other people with sickle cell disease
Support at school or university
Your rights
Talk to your treatment team on a regular basis

Support in the workplace

As with any chronic disease, sickle cell disease may cause you to be less productive, meaning you have to call in sick more frequently.1 This can understandably lead to worry and anxiety, particularly if your job security is at risk as a result and you are therefore experiencing higher levels of stress.

In this situation, it is good to know that people with sickle cell disease have a right to support in the workplace.2 This can give you greater security in your everyday life.

Renna, who lives with sickle cell disease, looks something up on her cell phone.

Support from other people with sickle cell disease

Find a suitable patient group or self-help group in your area: Community page. This will allow you to talk to people with experience about various topics relating to professional life and to get advice about how to reconcile your work with your existing limitations.

John writes something in a notebook at the table.

Support at school and university

As a pupil or student, sickle cell disease may affect your education.3,4 Particularly if your sickle cell disease diagnosis is fairly recent, you will need time to adapt your life and adjust your mindset where necessary.

The teaching staff and your classmates may not be aware of the effects that sickle cell disease has on your life. It is therefore important that, right from a young age, you are aware of your rights as someone with a chronic disease, so that your conditions are comparable to those of your classmates and, subsequently, your fellow students. You are entitled to something known as "disadvantage compensation".5,6 This is set out in legislation and states that you should not suffer any disadvantages as a result of your impediment – this applies to your studies as well as to examinations and certain activities at school or at university.5,6

Let your school or university know in plenty of time that you are suffering from a chronic disease. You can then discuss together what your compensation might look like.

Your rights

As someone with sickle cell disease, you have specific rights that are designed to support you in your education and career.5,6 The following section includes some of the key questions and answers relating to this topic:

Close-up of Djena, who lives with sickle cell disease, looking head-on into the camera.
    Is sickle cell disease considered a disability by law?

    Whether sickle cell disease is considered a recognised disability entitling you to a disability card depends on the severity of your disease.7 Ask your doctor for an initial assessment. A recognised disability can mean, for example, that you are protected from being fired, you have more holiday days and you have to pay less in tax.2,7 To receive a disability card, you must submit a written application to the welfare office.2,7 For more information about this application, contact your council.

      What aids are available?

      There are many different aids that can support you at your workplace.1 Talk to your employer about the difficulties you are currently experiencing at work and what could be improved. In addition, you can ask people at your company, such as safety officers or integration officers, for advice.1 Work aids are funded by various service providers, such as your insurance company.1

        Are you entitled to working credits or living expenses support?

        If you have a recognised disability due to your sickle cell disease or if you are a family member and carer for someone with a disability, you can apply for and receive financial support.8 If a child has a recognised disability, you can continue to receive child benefit when the child is older than 18.8 With a disability, it is also possible to receive tax relief.8 Incidentally, as someone with a disability, you can also receive social security benefits as a foreign national.8 In addition, you are entitled to various aids (see above).1 Alternatively, you can receive a certain amount of money from your health insurance company, for example, as a personal budget, which you can then use to purchase these aids yourself.8 If you are unemployed or your income is not enough to support you, you can receive financial support from the Jobcenter.8

        Talk to your treatment team on a regular basis

        Life with sickle cell disease is different for everyone. Talk to your treatment team about how you can maintain your physical and emotional wellbeing at work.

        Remember that you may have certain special rights in the workplace.2 If you feel that you are being unfairly treated, you can seek advice. You can also visit our Community page to find support in your area.

        Illustration of a purple smartphone with various media elements like videos, photos and speech bubbles around it.
        Resource hub:
        • Top tips for self-management
        • Your wellbeing diary
        • Set targets that work for you
        • Get the most out of your medical appointments
        VIEW ALL RESOURCES
        The website Realtalk! Sichelzellkrankheit is intended to support you with as many questions as possible about sickle cell disease.