Myelodysplastic Syndromes (MDS)

Myelodysplastic syndromes are a group of diseases where a person’s bone marrow fails to produce enough healthy blood cells, and instead produces immature blood cells called blasts.

Short Bowel Syndrome with Intestinal Failure (SBS-IF)

Short bowel syndrome with intestinal failure is a condition where individuals cannot absorb nutrients properly because they lack part of their intestine due to portions being surgically removed, parts missing since birth, or portions damaged and unable to function properly.

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

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

Registered doctors

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

John Smith, MD

Gastroenterologist • Nashville, TN

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 BEXMAB study is not right for you, there are approximately 360 research studies actively recruiting participants. Search this site to find MDS research studies near you.

Visit Clinicaltrials.gov

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.

Featured Study

BEXMAB MDS Study

If you have myelodysplastic syndrome (MDS) and were previously treated with certain treatments that were not effective, you may be eligible for this MDS study.

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.

Principal Investigator Spotlight

Setting an Example for Excellence in MDS Treatment

Meet Dr. Bejar, a physician-scientist dedicated to individualized MDS care and pioneering research. Discover his hopeful vision for the future of MDS treatments.

Read Article

Dr. Rafael Bejar
Hematologist, Medical Oncologist, Associate Professor of Medicine at UC San Diego Health

Prioritizing and Improving Patient Care Practices for People Diagnosed with Myelodysplastic Syndromes

Meet Dr. Borate, a seasoned hematologist, intrigued by cutting-edge MDS testing tools for early diagnosis. Dive into her expertise and the exciting possibilities ahead in our article.

Read Article

Dr. Uma Borate
Clinical Associate Professor, Acute Leukemia Clinical Research Director, Hematologic Malignancies at Risk of Leukemic Transformation (HALT) Program Leader at Arthur G. James Cancer Hospital and Richard J. Solove Research Institute

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 Support Group

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, healthcare teams and member organizations 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.

The Leukemia & Lymphoma Society

A non-profit organization committed to finding a cure for various blood cancers and improving the quality of life for patients and their families.

HealthTree Foundation for Myelodysplastic Syndromes

This organization aims to assist patients in understanding their disease and navigating it more effectively. HealthTree Foundation supports various diseases including acute myeloid leukemia, chronic lymphocytic leukemia, kidney disease, multiple myeloma, and myelodysplastic syndromes.

LLS Clinical Trial Support Center

This center helps connect people with clinical studies and trial sites. Patients will be connected with a LLS Clinical Trial Nurse Navigator who will provide assistance through the clinical trial process.

The Leukemia & Lymphoma Society: Myelodysplastic Syndromes Website

This website created by The Leukemia & Lymphoma Society provides additional information about MDS.

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.

MDS Professional Report

This podcast, created by the MDS Foundation, provides information on MDS, including updates on diagnosis, treatments, and clinical research.

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.

New Treatment Approved for Certain Patients Living With Myelodysplastic Syndromes

Visit this article to learn how the FDA has approved imetelstat (known commercially as RYTELO) for the treatment of MDS in certain individuals.

Transforming the Treatment Landscape for AML and MDS With myeloMATCH

Read this article to learn more about the myeloMATCH trial that is aiming to improve outcomes for those with acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS).

Move for MDS

Move for MDS is a walk hosted by the MDS Foundation to raise awareness and accelerate research. Visit the website to learn more about the upcoming walks in 2024.

March for Marrow Walks

Visit the website to attend an upcoming March for Marrow walk or organize your own event.

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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