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How is MDS diagnosed?
Your healthcare team can diagnose MDS by running various tests on, among other things, your bone marrow and blood samples. These tests help your healthcare team diagnose your type of MDS by answering the following questions:
Learning you have MDS can be hard, and navigating the treatment journey can be overwhelming. You may experience a range of thoughts as you come to terms with your MDS diagnosis, and it’s okay to be worried about what the future holds. Talk with your healthcare team and ask any questions you have so you can feel more informed when making treatment decisions. Learning more about MDS is the first step in taking control.
In a type of myelodysplastic syndromes called MDS-RS, immature red blood cells (RBCs) pile up in the bone marrow. Many of these piled-up RBCs are ring sideroblasts (RS). RS are not-fully-grown, or immature, RBCs that have a ring of small circular iron clumps around the center structure of the cell where most cells store DNA. RS contribute to having low (red) blood cell counts. How many RS you have is part of diagnosing your type of MDS. You can be diagnosed with (MDS-RS) if at least 15% (15 out of every 100) of your red blood cells are ring sideroblasts.
SF3B1 is a kind of specific gene mutation that is common in MDS. If blood test results identify you have this specific gene mutation in your blood cells, you only need an RS percentage of 5% for your MDS type to be MDS-RS. The SF3B1 mutation is very common and seen in as many as 80% of people with MDS-RS.
After your healthcare team has confirmed that you have MDS, they will give you a risk score. This score helps your healthcare team understand the chances of your MDS getting worse. Your risk score is one important factor in predicting how your MDS might affect you as time goes on. However, it’s not the only one. Your doctor will look at other factors, such as your age, your ability to perform daily tasks, the severity of your symptoms, and your recent blood test results.
If you’re worried about your risk score or the severity of your symptoms, consider talking about your concerns with other people who have MDS, your healthcare team, or even a counselor.
When you’re coping with an MDS diagnosis, caring for your mental health is important. There are lots of ways to care for your mental health. You can start by doing nice things for yourself, like:
You’re not alone. Your friends and family want to help you however they can, so don’t feel bad about leaning on them and asking for support. Many people living with MDS also find it helpful to connect with other people going through the same thing. Make sure you talk to your healthcare team before making any lifestyle changes.
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