MDS is a bone marrow failure disorder

Many patients or caregivers LIVING with MDS continue to work.

Ask your health care provider how to plan for the time off you will need to make sure you are receiving your treatment in the safest and most effective way possible.  Understand that these recommendations may change unexpectedly due to disease or treatment related factors.  It will be important to set up a network of support for these unexpected events.  It is also a good idea to ask your health care provider to write a letter describing your schedule for treatment or clinic visits.

It is important to ask about your employers’ options for sick-leave and family medical leave.

The Family and Medical Leave Act (FMLA) provides certain employees with up to 12 weeks of unpaid, job-protected leave per year. It also requires that their group health benefits be maintained during the leave.

For some patients, there may a need to pursue Social Security Disability.  Ask if there is a Social Worker that might help guide you through this process.  The process for approval can take several weeks.

Social Security Disability Insurance pays benefits to you and certain members of your family if you are “insured,” meaning that you worked long enough and paid Social Security taxes.

Supplemental Security Income pays benefits based on financial need.

When you apply for either program, we will collect medical and other information from you and decide about if you meet Social Security’s definition of disability.

Use the Benefits Eligibility Screening Tool to find out which programs may be able to pay you benefits.

Ask your certified public accountant about options you may have to access any retirement savings early

Additional resources:

Cancer Care: Workplace resources  Balancing work and caregiving

Review answers to commonly asked questions or get answers to your questions from an MDS expert