A year ago, Tom Villeneuve noticed a strange rash on his skin. When he went to the doctor’s office, he left with a rare diagnosis — Sézary Syndrome, a type of cutanaceous lymphoma.
“It is hard to diagnose so I felt lucky that my dermatologist ran the right test,” he said.
The disease is an accumulation of T-cells on the skin and in Villeneuve’s case, in his blood stream.
“I was pretty devastated when I found out because I have been very healthy up until this point in my life,” he said.
Villeneuve has done rounds of chemotherapy and radiation, but the only way to fully be cured is with an allogenic stem cell transplant.
To do a blood stem cell transplant, a donor’s blood will be passed through a machine that removes all of the stem cells out of the blood. The original blood is then returned to the donor and the stem cells are given to the patient. Without the transplant, Villeneuve could never truly be cured, as he would continue to go into remission.
“Sometimes remission can be two months and sometimes two years,” he said.
His son, Eric Villeneuve, a second-year criminal justice student and a member of Army ROTC at USC, says it was difficult for him to process his father’s diagnosis
“My reaction was that I was shocked, I didn’t really want to believe it even though I new it was true,” Eric Villeneuve said.
He has since decided to reach out to the USC community to try and help his father and others who have rare diseases like his.
He reached out to Alexi McHugh, a second-year public health student and Student Government Secretary of Campus Health and Wellness, to help find a match for his father.
McHugh and Megan Plassmeyer, a first-year public health student and Deputy Secretary of Campus Health and Wellness, teamed up with the Be the Match organization, which helps find marrow donors for patients and has the largest, most diverse marrow registry in the world. With the organization’s help, they are now working to plan a swab drive called Test for Tom to try and find a donor.
They are in the process of finding a date and location to hold the event and will be using various ways to spread the word about the swab drive, including social media. Eric Villeneuve and other volunteers will also be trained by Be The Match to take cheek swabs and seal them to send and find potential matches.
To volunteer, donate or become involved in any way, contact gettestedfortom@gmail.com.