The following information is from Mikkael Sekeres, M.D., Director of Cleveland Clinic’s Leukemia Program and a co-chair of the Aplastic Anemia & MDS International Foundation’s medical advisory board:
“Good Morning America” co-host Robin Roberts’ recent announcement of her battle with Myelodysplastic syndrome, or MDS, is helping to shine the light on a rare, relatively unknown disease that has struggled to gain awareness among patients and even physicians – which is why it has also struggled to attract needed research funding.
Myelodysplastic syndrome is a serious condition that some consider to be a cancer. It affects about 15,000 people every year in the U.S., and there are tens of thousands of people in the U.S. living with MDS. The average age at diagnosis is 70.
As the U.S. population continues to age, and as we are successfully treating other cancers with chemotherapy and radiation therapy (and these treatments are sometimes causing MDS as a secondary cancer), we are seeing more and more each year. Luckily, over the past 10 years we have seen three drugs approved by the FDA specifically for the treatment of MDS come to market, and we have a treatment approach – in the form of bone marrow transplantation – that can cure MDS.
Ninety percent of cases have no known cause. The remaining 10 percent of cases arise as a result of treatment for other cancers.
Treatments include regular blood tests, pills and shots. The only cure is a bone marrow transplant. MDS is not a genetic disorder, and family members of those who are diagnosed do not need to be tested. If you think you are experiencing signs of MDS, talk to your primary care physician. MDS is a serious condition that needs treatment, but with treatment, patients are often able to live and thrive.
Cleveland Clinic recently announced a new $16 million research consortium, funded by the Aplastic Anemia & MDS International Foundation and a private foundation, that is focused on fast-tracking new treatments by pooling patients and resources among six cancer centers with strong MDS expertise to try to overcome these challenges.