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 back in for more blood tests after noticing her white blood cell counts were low.  O’Neill was referred to a specialist at the Adelaide and Meath Hospital in Dublin.

“I think if I had not started menopause when I did, I would not have found out about my illness,” said O’Neill.  “I was told they caught me at an early stage.”

When she arrived at the hospital for the additional blood tests, she noticed it was a cancer ward.  “I was very shocked!” she described.

A few days later, O’Neill was asked to return to the hospital for a bone marrow test.  When the test results returned, she was told she had MDS.

“I was told it was a ‘wait and see illness’ and it mostly occurs in elderly people,” O’Neill said.  “None of my family have this cancer but [they do have] cancer of different types.”

A nuclear power plant is located across the Irish Sea in Sellafield, England. “I believe Sellafield has a lot to do with all the cancers on the east coast of Ireland,” said O’Neill.

The plant has “been blamed for a lot of cancers on the east coast, and a lot of children have been born with Down syndrome,” she continued

After her diagnosis, O’Neill made weekly trips to the hospital for blood tests. 

However, O’Neill had already planned a vacation to Greece in September and a trip to New York in November to celebrate her 50^th birthday.

“I don’t think the doctor thought I was well enough to go New York,” recalled O’Neill.

Despite her doctor’s advice against traveling to the United States, O’Neill visited New York for four days.

“I was okay until the last day,” recalled O’Neill.  “I got pains in my legs and was very tired.  Two days after I got back to Ireland, I was out of breath if I walked anywhere.”

O’Neill’s doctor immediately sent her to the hospital where she stayed for two days and received four blood transfusions to increase her blood counts.

O’Neill is currently treated with NeoRecormon (epoetin beta) to help with her fatigue.

“I was feeling tired and going to bed earlier – I just put it down to it being winter,” recalled O’Neill.

As her blood counts have increased, her NeoRecormon dosage has decreased and O’Neill has learned how to administer her own injections.

“I still can’t believe how sick I was,” reflected O’Neill.  “I just put up with it.”

Up until November, O’Neill went to the hospital every four months to monitor her blood counts.

However, at her last hospital visit in early November, her blood tests showed that her hemoglobin (a red blood cell protein) had fallen.

“I’ll be back in six weeks to keep an eye on it,” explained O’Neill.  “If the blood count stays down, they are going to increase the NeoRecormon dose.”

O’Neill is currently looking for a matched stem cell donor on the Irish Unrelated Bone Marrow Registry after finding out her two younger sisters are not matches.  Her doctors plan for her to receive a stem cell transplant when her condition worsens.

“Hopefully a transplant will be a good while away yet,” said O’Neill.

In the meantime, O’Neill has learned to be more in tune with her body.  “I have loads of energy, but sometimes I might get tired.  I listen to my body and have a nap,” she said.