A Different Road to Campus Success

Editor's Note: This is the first in a series focusing on students who face mental and physical challenges.

It is not uncommon for freshman Vincent Whelan to be in such severe joint pain that he cannot sit still.

But unlike most students, who get sore from time to time after workouts or minor injuries, Whelan's pain comes from his swollen joints slowly turning into bone, often aching so much he cannot make it to class.

"No one ever really knows when it's going to happen," says Whelan, who has Fibrodysplasia Ossificans Progressiva, or FOP, a rare genetic disorder.

The degenerative condition, which affects about 2,500 people worldwide, spontaneously turns muscles, tendons and ligaments permanently into bone.

For Whelan, dealing with random onsets of the bone transformations, or flare-ups, is the most difficult-often the swelling causes so much pain that he cannot move. The flare-ups can last several days and can cause stiffness, locking or permanent immobility.

The condition has put constraints on Whelan's life since he was diagnosed nearly 10 years ago.

Because bumps or falls can cause a flare-up, Whelan cannot play any contact sports.

The flare-ups can also disrupt school work. "It makes it harder to get some assignments done on time," he says. "Sometimes I'm in pain so much I have to be lying down so I can't really do my homework."

But the social consequences that come with having a disability are hard to overcome as well.

Sometimes, Whelan says, people shift their gaze to the ground to avoid making eye contact with him.

"I think it's a subconscious thing," he says. "When we're young, kids are told not to stare at ‘them,' so they equate that with not looking at them, period."

But Whelan says he does not let these situations get under his skin.

"If you don't want to get to know me, then that's your loss," he says.

Despite these circumstances, Whelan's condition has not darkened his outlook.

Instead of moping over missing out on soccer games, Whelan has taken up playing the piano. Now, he plays everything from classical to contemporary music, but loves Beethoven. He also plays the trumpet, particularly pep music.

"I think sometimes that it's unfair, but I just deal with it," he says.

Whelan also does not let his physical disability hinder him from traveling. Whelan has traveled to Argentina with his family, and he plans to visit Italy after he graduates.

It has been close to a decade since Whelan was diagnosed, and by now his spontaneous flare-ups hardly make him nervous, he says.

While taking medication daily helps decrease the pain of his flare-ups, Whelan has also found other ways to work around his condition.

"I have little devices I use to make everyday things much easier," he says.

Bending over is difficult for him, so Whelan uses a long, clawlike instrument to pick up objects, and one to put on his socks. He also uses a medical scooter during school, which he says is helpful in maneuvering the hilly campus.

While there is no known cure for FOP and the condition does not improve over time, the campus has taken steps to aid Whelan.

His accommodations, provided by the campus's Disabled Students' Program, allow him extended time on tests and excused absences from class if flare-ups occur unexpectedly.

The program provides special arrangements for more than 600 students with a variety of disabilities. For example, physically disabled students may get extra breaks during exams, or the option of having an oral rather than written test.

"Cal is extremely accommodating of students with disabilities," says Peter O'Connell, disability access coordinator. "We strive to make sure everyone has equal program access."

For Whelan, an intended integrative biology major, his condition drives him to work toward a cure.

Whelan will intern in a University of Pennsylvania lab this summer to help researchers learn more about the disorder.

"I am going to do an internship next summer," he says. "To help ... in the quest to find a cure."

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