A call for XP society
Xeroderma Pigmentosum (XP) is a rare genetic disease that has no medical cure. Individual with XP have to avoid the sun and bright lights, because their bodies do not have the ability to repair skin damage occurring due to exposure to ultraviolet rays. It is quite terrifying to know that one's child is diagnosed with such a disease, XP that has no treatment. Tarequzzaman Khan and Latifa Akhter Moni, are the hapless and unfortunate parents of a seven-year-old Sraboni Zaman Turna and three-year-old Monimuzzaman Khan, who were diagnosed with this rare disease at their early age. The disease affects both males and females. It makes its presence felt through symptoms — unusually dark freckles or severe sunburns following a brief exposure to sunlight. Undiagnosed and untreated XP can lead to early onset of skin cancer and blindness. In addition, approximately 20 percent of the people with XP develop progressive neurological disease. The treatment mainly consists of taking precaution against UV ray exposure. Considering all these odds and horrible situation, Turna and Monim's parents trying to form a society exclusively for the XP patients, experts, parents as well as the health activists who are interested about this rare disease. Tarequzzaman said, "We want a common platform to work together to ensure that every child with the disease (XP) will receive treatment or rehabilitation." Patients, interested persons or organisations are requested to communicate with the initiator Tarequzzaman at this number +8801712263896 or e-mail to xpsociety.bd@gmail.com
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