Nora Ephron’s Last Battle, Robin Roberts’ Current One: What is Myelodysplastic Syndrome (MDS)? by Dr. Sharon Orrange/Primary Care Physician: at DailyStrength Doctors and Advisors

Dr. Orrange received her BA in Biology at the University of California, San Diego, and a Masters Degree in Health Sciences at the Johns Hopkins University School of Public Health. She received her MD from the USC Keck School of…

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Assistant Professor of Clinical Medicine, Division of Geriatric, Hospital and General Internal Medicine, Keck School of Medicine, University of Southern California

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Nora Ephron’s Last Battle, Robin Roberts’ Current One: What is Myelodysplastic Syndrome (MDS)?

Posted in Myelodysplasia by Dr. Sharon Orrange on Jul 03, 2012

Myelodysplastic syndromes (MDS) have been on everyone’s tongues since hearing about the great screenwriter Nora Ephron’s death. Many of you also saw Robin Roberts announce on Good Morning America that she too had MDS and was taking time off to fight it, and will receive a bone marrow transplant from her sister who is a perfect match.

Here is what you need to know about MDS and how you can help those who may not have a match in their family.

1. What are Myelodysplastic syndromes? Myelodysplastic syndromes (MDS) are a group of conditions that involve the blood. Blood is made up of different types of cells (red blood cells, white blood cells, and platelets.) These cells are made in the middle of the bones, in the bone marrow.

2. When people have MDS, their bone marrow does not work normally to make these cells. It makes abnormal blood cells and does not make enough normal blood cells. This is what causes the problems related to MDS.

3. What are the symptoms of MDS? Many people with MDS have no symptoms. Some find out they have MDS only after a routine blood test (CBC or complete blood count) is done for a different reason. When you do have symptoms from MDS (as the disease progresses most will) it might be:
- Feeling weak, tired, or dizzy (from anemia or low red blood cells)

- Have trouble thinking clearly

- Have trouble breathing (again, from the anemia)

- Bruise or bleed more easily than usual (low platelets)

- Get infections more easily than usual (low or non-functioning white blood cells)
4. Is there a test for MDS? Yes. To test for MDS, your doctor can do blood tests. A CBC (complete blood count) will look at your white cells, red cells, and platelets. If you have an abnormal CBC your doctor may send you to a hematologist for a bone marrow biopsy.

5. Are there different types of MDS? Yes and your hematologist will do tests to figure out which type you have.

6. How is MDS treated? The treatment depends on the type of MDS you have, your symptoms, and your age. Most treatments do not cure MDS but can improve symptoms and help you feel better.

7. What are some examples of treatment options: Blood transfusions, medications that stimulate the bone marrow to work better, chemotherapy, and bone marrow transplant, as Robin Roberts is pursuing, are all options for treatment. Bone marrow transplant is the only treatment that can cure MDS and it requires a donor whose cells match yours. In Caucasians, 93% will find a match in a registry but only 66% of African Americans will find a match. It is even harder for other races or mixed raced folks to find a match.

8. How can I register to be a donor? It’s easy to do and requires only a swab of your cheek. If you are a match for someone you may only have to provide peripheral stem cell donation (easier than a bone marrow biopsy) but occasionally marrow is retrieved surgically. There are many myths about donation so read about how easy it actually is.