We are searching data for your request:
Upon completion, a link will appear to access the found materials.
Of the Progeria (the disease of Benjamin Button), only 250 cases are known in the world. The child's body ages rapidly. Their life expectancy does not exceed 21 years. But there are many more strange diseases: Neurofibromastosis, Infantile Spinal Muscular Atrophy, Sanfilippo... It is estimated that there are about 8,000 rare diseases throughout the planet, of which hardly anything is known.
February 28 is celebrated around the world Rare Disease Day. They are mostly genetic diseases (in 80% of cases), affecting 8% of the world's population. 50% are children. They are born with a mutation in one of their genes. A strange, different mutation that has scientists all over the world disoriented.
Living with a rare disease is difficult in itself. Not only because of the symptoms, because of the pain or because of the physical consequences that it carries. But because of the lack of information, care and misunderstanding. When the person who suffers it is also a child, we feel that the disease is more cruel. How is it possible for a child to grow old suddenly? Have bones brittle like glass? That can't get out of a bubble?
There are incredible rare diseases. Some are unique, like the one that prevents 12-year-old Landon Jones from eating or drinking, because has never felt the sensation of hunger or thirst. His illness has no name yet. Or the one that makes Ari, an Indonesian boy, have 'stripes' like scabs all over his body.
TheSpanish Federation of Rare Diseases (ERDF) asks for help. Help to investigate. Help to improve the quality of life of all these patients, so as not to feel invisible. So as not to run into indifference. Help to train more doctors to investigate each of these tiny drops of water in the middle of the ocean.
The250 million people affected by some rare disease worldwidethey scream silently. And through their hands, held high, they ask for other hands to help them. This is the moving, vindictive and beautiful video that seeks to move everyone's heart:
You can read more articles similar to Rare diseases affect children too, in the category of Children's Diseases on site.