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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.

For this reason, you should know that as a person with sickle cell disease, you can get access to support at your workplace.2 This can help you feel more secure 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 managed by the cantonal disability advisory office, 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 disability depends on the severity of your disease and must be recognised by the state invalidity insurance.7,8 If it is a recognised disability, this can mean that you can benefit from a range of support, such as flexible working hours, workplace adjustments depending on your needs, a pass that gives you advantages in public transportation or for parking.7,8 You can find out more about these benefits from your city administration or a patient organisation. These benefits can vary from canton to canton. It’s always worth asking!

      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 awarded to people with recognised inherited medical conditions are funded by various service providers, such as the state invalidity insurance, your health insurance company, or sometimes even your employer itself.7,8

        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.9 If your child has a recognised disability, you may receive additional financial support in addition to child support, even if your child is already more than 16 years old.10 You may also have to pay lower taxes if you have a disability.11 Incidentally, all of this applies even if you are not a Swiss citizen.

        If you have a recognised inherited medical condition, you are also entitled to various aids (see above).1 In most cases, the state invalidity insurance will usually handle the costs of your treatment, medicines, and special aids until you are 20 years old. From that point, health insurance usually handles the costs of treatment. However, even after this age, aids are still covered by the state invalidity insurance. It is always helpful to ask the invalidity insurance service what additional benefits you may be entitled to or whether the health insurance can ensure you receive top services. However, this can vary from canton to canton.

        If you are unemployed, you may be able to apply for and receive financial support from the regional unemployment insurance service. 12

        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 well-being diary
        • Set targets that work for you
        • Get the most out of your medical appointments
        SEE ALL RESOURCES
          Literature
          1. https://www.familienratgeber.de/lebensphasen/bildung-arbeit/hilfsmittel-beruf.php. Last accessed: 18.09.2023.
          2. https://www.besser-leben-service.de/formulare/gdb-antrag-formulare-und-adressen/#:~:text=Um%20den%20GdB%20und%20damit,an%20den%20%C3%A4rztlichen%20Dienst%20weiter. Last accessed: 18.09.2023.
          3. Heitzer AM et al. Front Neurol 2021;12:786065. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8711768/.Last accessed: 18.09.2023.
          4. Alhazmi A et al. Children (Basel) 2021;9(1):15. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8773889/. Last accessed: 18.09.2023.
          5. https://www.dguv-lug.de/magazin-dguv-pluspunkt/chronische-krankheiten/nachteilsausgleich/#:~:text=Den. Last accessed: 18.09.2023.
          6. https://www.studierendenwerke.de/themen/studieren-mit-behinderung/studium-und-pruefungen/nachteilsausgleiche/nachteilsausgleich-antragsverfahren-und-nachweise. Last accessed: 18.09.2023.
          7. https://www.fedlex.admin.ch/eli/cc/2003/667/de Last accessed: 18.09.2023.
          8. Arbeit und Gleichstellung für Menschen mit Behinderungen. Überblick über die rechtlichen Grundlagen. Eidgenössisches Departement des Innern EDI. Bern, Juli 2017
          9. https://www.ahv-iv.ch/de/Merkbl%C3%A4tter-Formulare/Merkbl%C3%A4tter/Leistungen-der-IV Last accessed: 18.09.2023.
          10. https://www.ch.ch/de/arbeit/familie-und-arbeit/familienzulagen#wer-hat-anspruch-auf-familienzulagen Last accessed: 18.09.2023.
          11. https://www.proinfirmis.ch/behindertwastun/steuern/abzug-von-krankheits-und-behinderungsbedingten-kosten.html Last accessed: 18.09.2023.
          12. https://www.arbeit.swiss/secoalv/de/home.html Last accessed: 18.09.2023.
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