Types of MDS

There are two types of MDS: lower-risk and higher-risk. The type of MDS a patient has is defined by the number of blasts that are in their bone marrow, which determines the severity. Blasts refer to abnormal immature white blood cells, and people with MDS have too many blasts in their bone marrow.
Lower-risk MDS
Lower-risk MDS is defined as having less than 5 blasts out of 100 white blood cells in the bone marrow.
Higher-risk MDS
Higher-risk MDS is defined as having between 5 and 19 blasts out of 100 white blood cells in the bone marrow.
When there are 20 or more blasts out of 100 white blood cells in the bone marrow, then a patient has acute myelogenous leukemia.

Symptoms

Symptoms of MDS are based on how severe a patient’s MDS is.  
Patients with MDS may lack healthy red blood cells to carry oxygen throughout the body, which causes anemia. Many patients with MDS experience symptoms of anemia including:  
Fatigue
Shortness of breath
Pale skin
Patients with MDS may lack healthy white blood cells that help the body fight infections, which can lead to neutropenia. Neutropenia can lead to patients having symptoms including:  
Unexplained fevers
Frequent or severe infections  
Patients with MDS may lack platelets that control bleeding and wound healing, which can lead to thrombocytopenia. Thrombocytopenia may lead to symptoms including:
Easy bruising
Unusual and prolonged bleeding  
Pinhead-sized red spots on the skin (petechiae)

Diagnosis Journey

Learn more about how people who are experiencing signs and symptoms of myelodysplastic syndrome can be diagnosed.
When to see your doctor
If you are experiencing any of the symptoms below, it may be time to bring up MDS with your physician/doctor:
  • Bleeding from gums and nose
  • Blood in urine or stool
  • Scattered rashes on limbs (petechiae)
  • Recurrent infections and/or fevers
  • Pale, easily bruised skin
Process for diagnosis
Tests used to confirm a diagnosis of MDS include:
  • Blood tests: Blood tests can indicate the levels of red blood cells, white blood cells, and platelets in a person’s blood.
  • Biopsy of bone marrow: A bone marrow biopsy is when a small piece of bone marrow is removed from the body so it can be further examined for diagnosis.
  • Chromosome tests: Chromosome abnormalities are common in MDS patients, therefore evidence of this can be an indicator of the condition.

If you feel that you are not receiving adequate treatment, don't be afraid to explore other physicians and specialists in order to get the care you need.

Specialists

John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link

Registered doctors

John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link
John Smith, MD

Gastroenterologist • Nashville, TN

Link

Ongoing Research and Treatment Options

MDS is a rare disease that requires more effective treatment options. In order to find these new treatments for MDS, further research is necessary.

Current Research Studies

Check out our featured study below. If the Encore-MDS Study is not right for you, there are over 370 research studies actively recruiting participants. Search this site to find MDS research studies near you.

Featured Study

Encore-MDS Study
The goal of this study is to evaluate whether the investigational drug will help patients with lower-risk MDS improve their symptoms and reduce their number of transfusions.

Treatment Options

MDS treatment and condition management options include:
Blood Transfusions
Regular blood transfusions help provide the patient with a healthy amount of blood cells from donors to relieve symptoms of anemia.
Stem Cell/Bone Marrow Transplants
A bone marrow transplant gives patients healthy stem cells to replace the diseased bone marrow.
Chemotherapy
Chemotherapy can help reduce the abnormal stem cells and allow healthy stem cells to grow back. MDS can progress to acute leukemia, so MDS patients may be treated with chemotherapy as that is a common treatment option for leukemia.
Growth Factor Injections
Growth factor injections are drugs that may increase the production of red and white blood cells by stimulating the patient’s bone marrow.
Medications
Medications for MDS can help stimulate blood cells to mature, control immune system, and treat infections.

Resources

Find an online community of fellow MDS patients, caregivers, and advocates below as well as some other general resources!

Living with Myelodysplastic Syndromes
A group focused on living with MDS, sharing materials, and asking and answering questions about MDS.
Myelodysplastic Syndrome
A group focused on helping MDS patients find support and educating themselves on their condition.
MDS/MPN-U (Myelodysplastic/Myeloproliferative Neoplasms Unclassifiable) 
A group for those with a diagnosis of MDS/MPN-U, and their family members who are seeking to support them. This group focuses on awareness, togetherness, and support.
Reddit Group: r/MDS 
A subreddit community for news, discussion, and information related to MDS.
MDS Foundation
A global non-profit advocacy organization that has supported patients, their families, and healthcare providers in the fields of MDS and its related diseases for over 25 years.
MDS Alliance
An international organization that aims to ensure MDS patients have access to the best care. They aim to provide patients and healthcare teams with resources and the latest information about MDS.
The Aplastic Anemia & MDS International Foundation
A non-profit organization whose mission is to support patients and families living with aplastic anemia, myelodysplastic syndrome, paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases.
Podcasts for Patients
The "Podcasts for Patients" is a resource created by the Aplastic Anemia and MDS International Foundation for patients, caregivers, and families who want to learn more about rare blood cancers and bone marrow failure diseases.
Myelodysplastic Syndrome: A Conversation with Gail Whiteford
This episode of the "Blood Cancer Experience" podcast is called, "Myelodysplastic Syndrome: A Conversation with Gail Whiteford", and it shares Gail's story and experiences with myelodysplastic syndrome. The "Blood Cancer Experience" podcast discusses topics and stories related to blood cancer and is hosted by the Leukemia & Lymphoma Society of Canada.

Myelodysplastic Syndromes and Disability Benefits
Visit the resource below with information about disability benefits for people with myelodysplastic syndrome.

Myelodysplastic Syndromes - MDS: Coping with Treatment
Read the article below to learn more about different ways those with MDS who are going through treatment can learn how to better cope with the physical, emotional, social, and financial effects associated with MDS and treatment.

Syros Receives Positive Opinion on Orphan Drug Designation from the European Medicines Agency for Tamibarotene for the Treatment of MDS

Visit the article below that discusses the investigational drug called tamibarotene, which is a potential new treatment for MDS, and how it has gotten positive feedback from the European Medicines Agency

Study Defines Stem Cell Groups That Drive Myelodysplastic Syndromes, Finds Potential Targeted Therapy Option

Learn more about how researchers from The University of Texas MD Anderson Cancer Center discovered that two distinct classes of stem cells cause treatment resistance in patients with myelodysplastic syndromes (MDS) and identified potential therapeutic approaches that target these cells.

FAQs

What are the risk factors for MDS?
Risk factors of MDS include being older than 60 years old, smoking, prior history of cancer treatment, exposure to chemicals, and inherited genetic syndromes.
Are there complications that can occur with MDS?
Yes. The most common complications with MDS include anemia, infections, higher risk of cancer, and excessive bleeding.
How common is MDS?
MDS is a rare disease. In the U.S., there are about 60,000-170,000 people with MDS.
Does MDS turn into Leukemia?
About one third of patients with MDS may develop acute myeloid leukemia.
Can MDS be cured?
There is no cure for MDS. Visit the treatment options section to see potential avenues to help slow to progression of MDS.
View Treatment Options
Why are blood transfusions a common treatment option for MDS? 
Anemia is very common in patients with MDS. Blood transfusions can help reduce the symptoms of anemia including, fatigue, shortness of breath, and chest pains.
Is there a community I can join for people affected by MDS?
Yes! Visit the Resources section to find a MDS community for support.
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