Living Well
with MDS

For most people, an MDS diagnosis comes as a shock. It can feel isolating and lonely, and you may need time to learn how to live in your new normal.

On some days, people living with MDS may feel fine, but sometimes symptoms like being immunocompromised or deeply fatigued may limit you from engaging in your usual routines, being social, or doing the things you love.

Managing these feelings can be difficult. Being kind to yourself and learning to set boundaries is important. MDS doesn’t have to dominate your life, and you can discover ways to find the joy between the treatments and uncertainty.

Photograph of a man and a woman hugging and holding hands
Photograph of a nurse holding the shoulders of an elderly woman sitting at a desk
Photograph of a nurse holding the shoulders of an elderly woman sitting at a desk

Navigating the
Healthcare System
with Confidence

MDS treatment is a team effort that encompasses many roles, from nurses and oncologists to pharmacists and caregivers. Navigating this complex healthcare landscape can be challenging, but there are steps you can take to make it more manageable.

Illustrated icon of a doctor holding a tablet or clipboard

1. Build a support team
Start by assembling a healthcare team that specializes in MDS, including hematologists, oncologists, nurses, and other specialists.

Illustrated icon of a person reading a book or magazine

2. Educate yourself
Learn as much as you can about MDS, including its symptoms, mutations, and treatments.

Illustrated icon of a person speaking

3. Communicate with your healthcare team
Establish open communication with your team and don’t be afraid to ask questions, voice concerns, and provide feedback.

Illustrated icon of a hand writing with a pen or pencil

4. Keep detailed records
Keep track of your medical history, including diagnoses, treatments, medications, and test results.

Illustrated icon of three people speaking to each other with speech bubble above their heads

5. Take advantage of support services
Healthcare facilities often offer support services such as patient navigators, social workers, and support groups. These resources can help provide emotional support and practical help and guidance.

Find support resources
Photograph of two people sitting at a table with a doctor looking over something on a piece of paper.

Meeting with Your Doctor

When you first meet with your doctor after your MDS diagnosis, you will likely have many questions. You can expect your hematologist or oncologist to provide you with the following:

You can also ask about:

  • Availability of clinical trials
  • Any further testing or biopsies that need to be done
  • Resources about MDS or details of support groups

If you don’t feel comfortable or confident about what you are hearing, don’t be afraid to find a second opinion.

You are now leaving the MDS website to go to another Servier Patient Support Resource.
Do you want to proceed?

Yes

You are now leaving the MDS website to go to a Third Party Patient Resource.
Do you want to proceed?

Yes