Free treatment for rare diseases
There are some diseases that are so rare or even new that there are no logs or studies on how to deal with it or even cure it. Some patients have been turned down for years because there is no diagnosis. They are considered as the cold cases of medicine.
Not this time though. The National Institutes of Health is seeking the patients who have not been treated yet and if they qualify for the study, they could get some free care at the government’s top research hospital as scientists and doctors study the cause of their unknown or rare disease.
According to Dr. William Gahl, these patients were somehow abandoned by the medical professions because it seems that the dead end has been hit. The program will only be able to accommodate 100 patients a year but they are hoping that some of the really rare diseases will provide clues to more common diseases.
This is a chance to learn and at the same time render service according to the National Institutes of Health director Dr. Elias Zerhouni. In order to be considered for the new program, a doctor must be able to refer a patient to the NIH and send the medical logs for evaluation. The accepted patients will then undergo up to a week’s additional testing at the Clinical Center at no expense whatsoever.
This is a great chance to discover the cure and somehow learn why people have the very rare diseases. Hopefully, this turns out well and this is actually a good learning process and social service.
May 21st, 2008 at 4:45 am
I suffer from Aurafilia. Aurafilia is a very rare genetic disorder effecting approximately one in a million people. It is not known why but the rogue gene that causes the disease is almost 30% more prevalent in the northern hemisphere of the world. Which is pretty weird. No one is sure if that is related to atmosphere, humidity or the pull of the earth’s poles. In the United States of America it is suspected that there are approximately 300 Aurafilians, although perhaps only half of those have been diagnosed and are aware, that the way they experience the world is different to that of the person standing next to them. The Latin name for Aurafilia is Sonusaura Genisis-imperfecta translating roughly as “a genetically imperfect sound and / or feeling”.
An Aurafilian literally hears feelings. Not other people’s feelings obviously, it is nothing so voodoo, but for example under periods of acute stress, pleasure, happiness and most predominantly the coming together of extremely complex ideas, an Aurafilian will experience a range of sounds that others surrounding them wouldn’t hear. Of course, there is no physical sound, it is merely one part of the brain sending false messages to another part of the brain, and in fact has absolutely nothing to do with the ear as a sense. In most suffers, the effect of the condition is determined by the intensity of the emotion, for example in most suffers, a high pitch constant tone is experienced during sexual orgasm. Another cause and effect, maybe a sensation of pressure in the ears and a popping sound, during levels of high stressor a whooping sound during moments of intense happiness. In greater extremes, cases have been recorded of individuals who for example whose occupations are associated with extreme emotion or intense moments of thought, for example a concert pianist and a conceptual artist, who have in fact been rendered immobile or have been sent into seizures by the volume of the phantom noises. The French/English artist Spencer Anthony interviewed in the December 2001 issue of Flash Art, who’s suffered from the disorder was recorded saying: “Its like an uncertain type of alchemy, almost a blessing for me, much of what I do is to associate things, to take very different concepts articles or objects, for example, a Big Mac wrapper, the Capoeira dance, the notion of a photographically latent image the colour burnt sienna, along with all there historical and social meaning and weight and actually see my mind to see how they collide in time and space. That is the language of conceptual art, to see how things collide, to see what happens when things are bashed against each other. For me however, I am acutely in tune with the results of each collision, because I HEAR it. I experience the conceptual making of art works in my mind in two was. Logically in thought, but also sensually, in crashes and bangs and pops and whizzes. It is in many ways like a symphony of pure extreme thought. I know when an idea works simply because I hear it, I hear a sound that no one has heard before”.