Battling Rare Disorder, South Windsor Resident Set to Run Road Race

When South Windsor resident Richard Desmond was experiencing fatigue in 2004, he just believed he was burning the candle at both ends.

Indeed, at 25 years old, Richard thought he was just experiencing a lack of energy from working too hard.

But routine blood work performed during a physical required before he entered graduate school at UConn revealed something far more serious: Richard was diagnosed with aplastic anemia that was caused by a rare genetic disorder known as Dyskeratosis Congenita. Essentially, Richard has extremely low levels of red and white blood cell counts.

“It’s like a one in a million disease,” Richard said in a telephone interview. “My doctor called me [when I was diagnosed] and asked me, ‘Are you OK? You shouldn’t be walking around based on these numbers.'”

Richard’s family already knew that his older brother, Bob, had the disorder, but Rich set up an appointment at the Dana-Farber Cancer Institute in Boston, and convinced Bob to go with him, according to a press release. During that visit, Richard and Bob were both told that they needed to have a bone marrow stem cell transplant. (According to the release, Richard and Bob were the first-ever patients treated for aplastic anemia who also have Dyskeratosis Congenita.)

Doctors suggested that one of the brothers undergo the procedure first to see how he reacts.

According to a Dana-Farber press release, Bob, being the older brother that he is, went first and got his transplant in August 2005.

Things went pretty well and Richard got his bone marrow stem cell transplant in February 2006. The two brothers each enjoyed a strong initial recovery, though they developed graft-versus-host-disease (GVHD).

Unfortunately, Bob eventually succumbed to lung failure as a result of GVHD and died in October 2008.

The following spring, Richard, who never considered himself a distance runner, entered and finished the 7-mile Falmouth Road Race in Massachusetts for the first time. That first race he raised about $1,000 for Dana-Farber.

Fast forward to August 2012, and Richard, now 33, is still maintaining a relatively normal life - skin problems and dry-eye notwithstanding - despite battling GVHD.

“Other than [the dry-eye and skin problems], I’ve been good,” Richard said.

He’s finishing up his PhD at UConn and is hoping to land a tenured teaching job at a small college somewhere.

He’s also about to run his fourth New Balance Falmouth Road Race, which is scheduled for Aug. 12, in which he will join over 100 other members of the Dana-Farber team running in the Falmouth Road Race in support of adult and pediatric cancer care and research.

Richard will also be running in loving memory of his brother Bob. Entering the race, which draws about 10,000 runners, with his teammates has been helpful and cathartic, Richard said.

“It’s been a good experience,” Richard said. “Last year we sat down and shared our stories. You start to cry, but everybody winds up happy, because you know why you are doing it. … It’s a good race and a fun weekend.”

To donate to Richard’s cause or for more information on Dana-Farber, visit www.rundanafarber.org/falmouth2012/richd