The MDS Beacon™

Ellen O’Neill, a native of Bray on the eastern coast of Ireland, works in home help in addition to caring for her elderly father.

However, she herself became the patient in May 2005 when she was diagnosed with myelodysplastic syndromes (MDS) at the age of 50.

That May, O’Neill began having hot flashes, flu-like symptoms, and fatigue.  She attributed the symptoms to menopause and went to see her doctor in October 2005 for blood tests and to discuss starting hormone replacement therapy.

About a week later, her doctor called her…

Jack Grubb and his wife BJ were enjoying life as retirees in Etna, California, when they found out about Jack’s myelodysplastic syndrome diagnosis in 2009 after an annual physical exam. He was 67 years old at the time and felt very fit.

“My doctor noticed that my blood counts were low,” explained Jack.  “He decided we needed to see a specialist in Medford, Oregon.”

The specialist performed a bone marrow biopsy right away and informed Jack that he had myelodysplastic syndromes (MDS) with refractory anemia (low red blood cell…

After her doctor noticed falling blood counts and abnormal red blood cells during her annual physical, Vernette Godfrey was diagnosed with myelodysplastic syndromes in September 2006, a couple of weeks after her 81st birthday.

Unlike many newly diagnosed patients, Godfrey had prior firsthand experience with the disease.  Her late husband Harry was diagnosed with myelodysplastic syndromes (MDS) in March 1997.

“I was fortunate, in a way, knowing as much about MDS as I did, due to Harry,” said Godfrey.

Godfrey stood by her husband’s side during his fight with MDS. …

Peggy Mills, a 77-year-old contemporary painter living in Mercer Island, Washington, believes she has had a good, full life. When she was diagnosed with myelodysplastic syndromes (MDS) in 2006, she viewed MDS as “just another part of growing older.”

“If you’re 77, if it were not MDS, it would be something else that’s taking you down,” she explained.

Mills’ doctor noticed that she had low platelet counts during surgery on her stomach and referred her to a blood specialist.

The specialist confirmed that the low platelet counts were the result…

Ally Boyle, a 39-year-old veteran fire fighter from Scotland, has always been focused on helping others.

As an area commander for Strathclyde Fire and Rescue in South Lanarkshire, Scotland, he traveled to the United States after September 11 to help American firefighters clear the rubble at Ground Zero.

Then in July 2008, Ally was diagnosed with intermediate-1 myelodysplastic syndromes (MDS) with deletion 20q after suffering from exhaustion and viral infections for almost a year.

Initially Ally attributed his symptoms to changes in his personal life. His wife Maxine (also a…