Let Rare Diseased People Live!

There are people in the world that have diseases that the medical field has no intention of trying to find a cure. One is called Vanishing White Matter Disease that only 250 people have in the world. No it is nothing racial. It is a brain disorder that destroys white matter which is the substance that transmits neurological impulses and leads to the loss of motor control. In essence, eventually you can’t do a damn thing but think. The disease has no cure and can be fatal. Sure I would want to die an early death if my life was reduced to such little function. It is Sunday. A traditionally prayer day. Stop killing each other and be grateful that you are healthy enough to hate anything.There are people in the world that have diseases that the medical field has no intention of trying to find a cure. One is called Vanishing White Matter Disease that only 250 people have in the world. No it is nothing racial. It is a brain disorder that destroys white matter which is the substance that transmits neurological impulses and leads to the loss of motor control. In essence, eventually you can’t do a damn thing but think. The disease has no cure and can be fatal. Sure I would want to die an early death if my life was reduced to such little function. It is Sunday. A traditionally prayer day. Stop killing each other and be grateful that you are healthy enough to hate anything.There are people in the world that have diseases that the medical field has no intention of trying to find a cure. One is called Vanishing White Matter Disease that only 250 people have in the world. No it is nothing racial. It is a brain disorder that destroys white matter which is the substance that transmits neurological impulses and leads to the loss of motor control. In essence, eventually you can’t do a damn thing but think. The disease has no cure and can be fatal. Sure I would want to die an early death if my life was reduced to such little function. It is Sunday. A traditionally prayer day. Stop killing each other and be grateful that you are healthy enough to hate anything.

It is so difficult for parents of kids suffering from rare diseases. 96% of all rare diseases have no treatment at all.  With so few people suffering from them there is no incentive   for research and development for a cure. So bring in the sensitive, the caring the artistic people of the world to at least care. There is an Art Exhibit touring the country called Beyond the Diagnosis. It is a collection of portraits of children with rare diseases where the artist draws the figure with a syringe and dots the paint on the canvas. The artis is Lucas Kolasa.  Some of the diseases the children suffer from are San Phillippo Syndrom  or CDKL5 Disorder even Undiagnosed Metabolic Disorder.

There is a portrait   of the first person   ever diagnosed with Ngly1Dificiency in the  Gallery. That child has hundreds of seizures every day.   The objective through art is to humanize these diseases with real portraits of the real children suffering every day. There are diseases like Timothy Syndrome which is a fatal heart condition. I80-Syndrome is a rare chromosome disorder that slows the blood to their heart and lungs. Maybe someone will go beyond the diagnosis and try to find a cure. There are faces to all 7,000 rare diseases. Even if the parents find a lab willing to do the research for a cure they have a hard time being funded to continue the research. The children are then born with a death sentence.

There are experimental drugs out there to try to treat the symptoms but there still aren’t any cures. There are only about 100 children in clinical trials. Why is the path to drug approval not such an easy one since these people are willing to try anything to help themselves? Four months ag, a  FDA panel got together and held back drugs until the company proved that it actually worked.  That could take many years to prove meanwhile the drugs could at least be a comfort now.  Without approvals, for many access to the drugs at all can become impossible. It is like dangling a steak in front of a starving dog and saying you cant have it because you are not in a pack of dogs.

When did the entire drug industry become so rich and elites at the same time? Wealthy people and organizations are supposed to be generous and help the sick and the poor! What happened to the ethics in this country? Gone! At least visit the Art Gallery in Warwick, Rhode Island where artists are literally putting the faces to the diseases in portraits.  

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