Student With Rare Disease Ready for Three-Hour Challenge
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11 March 2011
By Bharat Yagnik
Jay Pathak, 17, will write his HSC (general) exams standing for over three hours, leaning on the wall for support lest he falls down and grows more bone.
Pathak suffers from Fibrodysplasia Ossificans Progressiva (FOP), an extremely rare disease of the connective tissue. Because of this, he has had painful bone growth, whenever he suffered even a minor injury. The condition causes extreme pain in the spine and as a result, Jay is also not able to sit.
An undeterred Jay is busy doing final revisions for his board exams that begin on March 17. Even while preparing, he leans on the wall of his house and studies on his feet. The effort may completely tire him out but has not dampened his spirits. "I want to complete MCA and become a computer whiz," says Jay who is one of the only 528 people in the world with this disorder.
In FOP patients, a mutation of body’s repair mechanism causes fibrous tissue, including muscle, tendon, and ligament to be ossified when damaged.
In many cases, injuries can cause joints to become permanently frozen in place.
Surgical removal of the extra bone growth has been shown to cause the body to ‘repair’ the affected area with more bone. Jay’s father Bhargav Pathak, a teacher, says the family never forced him to study. "But, he has always shown inclination towards education and keeps himself busy with computers. It is his will to write the board exams," says Pathak.
Jay has also refused a writer. "I cannot sit but my hands are perfectly fine and I trust myself to write the exams. If given the permission of standing with the support of the wall, I will be okay," says Jay, who concedes that he has made friends with the painful disease and prefers to live with positive attitude. "Impossible is nothing", comes his parting shot.