By Tracey Iraca, MDS Foundation
Myelodysplastic Syndromes (MDS) represent a group of rare bone marrow failure cancers most common in the older adult population, with a median age of onset of 73 years. Healthy bone marrow produces immature blood cells — called stem cells, progenitor cells, or blasts — that normally develop into mature, fully functional red blood cells, white blood cells, and platelets. In MDS, these stem cells may not mature and may accumulate in the bone marrow or they may have a shortened life span, resulting in fewer than normal mature blood cells in the circulation. Low blood cell counts are a hallmark feature of MDS and are responsible for some of the symptoms that MDS patients experience — infection, anemia, spontaneous bleeding, or easy bruising.
MDS remains an incurable disease in the absence of an allogeneic bone marrow transplant that, for the majority of MDS patients, is not an option due to their age, having other illnesses, and not having a caregiver that is able to provide complex care daily for several months following the transplant. There are only three FDA approved disease modifying agents for the treatment of these diseases, all of these being developed through clinical trials. Unfortunately, the estimated clinical trials enrollment in the United States for cancer patients is approximately 4% of the total cancer patient population. When considering the older adult and rare diseases such as MDS, this number is estimated to drop below 2.5%.
In addition, the majority of health care is provided in the outpatient setting, with only brief episodes of health care provider interaction. Caregivers, including partners/spouses, other family members, and friends, are expected to assume a primary role in providing medical and personal care and support of the patient, with little or no formal training. Many patients and caregivers may be overwhelmed and are at increased risk for anxiety, depression, fatigue, and other physical and psychological distress. The MDS Foundation, Inc. works to provide hope with innovation in science, advocacy, and most importantly support of patients and caregivers living with MDS.
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