Lächelnde Gaia, Betroffene mit Beta-Thalassämie major

Erfolgreich in Ausbildung und Job mit Beta-Thalassämie

Aisha, Betroffene mit Beta-Thalassämie major, macht sich Notizen

Aisha, a patient with beta thalassaemia major, from the United Kingdom

Overcoming challenges at school or at work

You may find that you miss school or work or have to call in sick due to treatment appointments or transfusions. This can lead to stress and worry. 

While in education or at work, you should have the same opportunities as everybody else – and you may need additional support with this. As a beta thalassaemia patient, you have a right to workplace adjustments to make your everyday life safer and more comfortable.

There are various options and laws, and it can soon all become unfathomable. If you have a specific question on beta thalassaemia at school/university or at work, you can seek support here or from a patient organisation

Beta thalassaemia at school or university

As a school or university student, you may find that your beta thalassaemia has an impact on your education.

Perhaps your teachers or fellow students don't know what beta thalassaemia is or how it affects your life. You might also find that you cannot take part in certain activities at school or university.

Students with impairments, such as those caused by a chronic disease like beta thalassaemia, have the right to compensation for disadvantages. This compensation is enshrined in law, and means that the disease must not result in any disadvantages when it comes to learning or taking exams.1,2 Tell your school or university that you have a chronic condition. You can then discuss together what your compensation might look like.

Computer-Tab mit Fragezeichen

Your rights

It doesn't matter what challenges you are faced with – it is always helpful to know your rights and the support to which you are entitled in order to make progress in your education and career.

    Whether beta thalassaemia is considered a recognised disability entitling you to a disability card depends on the severity of your condition. A recognised disability can mean that you are protected from being fired, you have more holiday days, you have to pay lower taxes, etc. To receive a disability card, you must submit a written application to the pension office ('Versorgungsamt').3 You can find out more about how to apply from your city administration or a patient organisation

      There are many different aids that can support you in your workplace. Tell your employer what you are currently finding difficult in your work and what could be improved. You can also ask safety officers, integration officers, the works council or the occupational doctor of your company for advice. The cost of any aids will then be covered by your employer or insurance.4  

        If your beta thalassaemia constitutes a recognised disability or if you care for a family member with a disability, you can receive financial support. If your child has a disability, you might still receive child support payments even if your child is over the age of 18. You may also have to pay lower taxes if you have a disability. Incidentally, all of this applies even if you are not a German citizen. 
        You are also entitled to various aids (see above). Alternatively, you can receive a certain amount of money from your health insurance company as a personal budget, which you can then use to purchase aids yourself. If you are unemployed or if your income is not enough for your living expenses, you can also receive financial support from the unemployment office.5

        Your road to success with beta thalassaemia at university, at school and on the job

        Your treatment team will help you to maintain your physical and mental health while at school, university or work. They will give you advice as to how you can succeed in your education or job with your condition. It is worth getting in touch with a patient organisation in this case too. Patients there will be familiar with these situations and no doubt be able to offer you advice

        Don't forget that you have certain special rights at school, at university or in the workplace. With the right support, you can definitely make a success of it!

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        Zwei Computer-Tabs

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        Unsere Unterlagen zum Herunterladen helfen Dir dabei, Dein Leben mit Beta-Thalassämie zu meistern.

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        The transition from child care to adult care
        Children with the chronic condition of beta thalassaemia eventually become young adults. This page brings together a few tips to help make this transition a success.
        Living a balanced life with your condition
        Are you struggling to find happiness? Click here for tips and positive thoughts to help you achieve more balance in your everyday life.
          1. Website Deutsche Gesetzliche Unfallversicherung. Wie funktioniert ein Nachteilsausgleich? https://www.dguv-lug.de/magazin-dguv-pluspunkt/chronische-en/nachteilsausgleich/#:~:text=Den Last accessed: 01.10.2024
          2. Website Universität zu Köln, Servicezentrum Inklusion. Nachteilsausgleich. https://inklusion.uni-koeln.de/tipps__informationen/nachteilsausgleich/index_ger.html Last accessed: 01.10.2024
          3. Website Besser Leben Ratgeber Service. Feststellung und Anerkennung einer Behinderung nach dem Schwerbehindertenrecht (GdB-Antrag). 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: 01.10.2024
          4. Website Familienratgeber.de. Hilfsmittel für den Beruf. https://www.familienratgeber.de/lebensphasen/bildung-arbeit/hilfsmittel-beruf.php Last accessed: 01.10.2024
          5. Website Familienportal, Bundesministerium für Familie, Senioren, Frauen und Jugend. Staatliche Leistungen für Menschen mit Behinderung. https://familienportal.de/familienportal/lebenslagen/leben-mit-behinderung/unterstuetzung-und-finanzielles Last accessed: 01.10.2024