MDS and Quality of Life

The symptoms and treatment related to myelodysplastic syndromes (MDS) can have a significant impact on a patient’s quality of life and psychological well being.1

The feelings people have when diagnosed with MDS vary widely. Many people feel anger and fear. Others feel relief to finally know why they have been experiencing such puzzling symptoms.1

MDS does not have to be severe to affect a person’s quality of life. Mild and moderate MDS and its symptoms can have substantial effects. The fatigue, irritability, weakness and other problems that may be associated with MDS1 can limit an individual’s daily activities1,2

Also, depending on the type of MDS a person has, he or she may need to avoid things that can complicate the illness. For instance, some people with MDS need to avoid things that can cause shortness of breath, like excessive exercise or high altitudes. Other people with MDS need to avoid situations that can increase their risk of infection, like spending time in crowded places or around sick people.3

In addition to the symptoms, people with MDS need to cope with a new way of life. Their normal activities are replaced with things like doctor appointments, blood tests, transfusions and other treatment-related activities. These changes can require a lot of time and be overwhelming.1,2

Whatever the disease type and prognosis, though, there are ways of coping with the demands of MDS and improving quality of life, including counseling, self-education about the disease, and medical treatment such as transfusions and other therapies.1,2

To learn more about coping with MDS, visit the Managing Myelodysplastic Syndromes section.