PROSPECT — A Prospect couple’s work to raise awareness about myeloma hasn’t waivered as they’ve set their sights on a statewide goal.
Prospect native Michael Tuohy was diagnosed with multiple myeloma, an incurable cancer that affects blood cells in bone marrow, in 2000.
Myeloma is the second most common blood cancer. Symptoms include bone pain, anemia, kidney issues, frequent infection and extreme fatigue.
Robin Tuohy, Michael’s wife, said their research of the disease ultimately led them to the International Myeloma Foundation.
Robin Tuohy, who now works as the senior director of support groups for the International Myeloma Foundation, said if left untreated, the disease could cause serious medical problems and the need for urgent medical care.
In 2001, with the help of the foundation, Robin and Michael Tuohy founded a local Myeloma Support Group. It was the first support group for myeloma in the state.
Since then the group has been very busy raising awareness about the disease.
“We’ve brought a number of educational programs to Connecticut, with speakers from New York and Boston, to our group meetings. The International Myeloma has brought in regional community workshops. We’ve brought in numerous myeloma experts and nurses to educate and speak on happenings in the treatments and side affect management,” Robin Tuohy said.
In 2007, the Tuohy family traveled across the country in a recreational vehicle, which they called the “Myeloma Mobile,” raising awareness and helping start myeloma support groups.
Robin Tuohy said last year she tried to get towns in Connecticut to name March as Multiple Myeloma Awareness Month. Prospect, Naugatuck and Watertown passed proclamations doing so.
This year those three towns, along with Bridgeport, named March Multiple Myeloma Awareness Month.
However, the group does not want to stop at just the local level. The group is trying to get the state of Connecticut to declare March as Myeloma Awareness Month, Robin Tuohy said.
“March is a good time of year. It’s spring. It’s new awakenings. It’s time for people to pay attention to myeloma,” Robin Tuohy said.
Robin Tuohy said the best place to learn about myeloma is at the International Myeloma Foundation’s website, www.myeloma.org, or by calling the foundation at (800) 452-2873. There are also teleconferences that take place once in a while interested people can listen to at any time by going to www.replay.myeloma.org.
“In 2000 those contacts were a godsend,” Robin Tuohy said. “If I didn’t find those our life would be very different.”