What would you do if your doctor told you that there was nothing that you could do for your child except for "love him, take good care of him and go home?" Would you be able to watch your child suffer through life just because something went wrong in his development? Just because some mutation happened in his genetic code that can not be reversed with modern technology? This is reality for many families who have children with diseases that effect 500 people or less in our country, but there is a new light for these families that could breed hope.
This light is called the Undiagnosed Diseases Program at the National Institute of Health. Around 200 people with extremely rare diseases will be admitted to this program, which consists of a staff of only 6 people at the moment. Hopefully, these people, through the help of extensive tests and constant research once the problem is diagnosed, can one day be free from their diseases.
The current state of affairs for these people in this country is terrible. You are considered lucky if you have a rare disease and a cure is found within decades. By that time, a lot of damage has already been done to your body, and most of it is irreversible (depending on the disease of course). The difficulty going through a problem like this in your life is arguably the most difficult problem any family can go through.
But the doctors of this new program have a goal higher than just save these individuals from pain. Past studies of intense research like what is going to happen has shown that by studying one disease, not only can you stop that disease, but you can learn collective mechanisms that diseases use. Once you figure out these mechanisms, future diagnoses of different diseases will be much easier to find.
I am so happy that something like this program is beginning, but I have a question: Why has it taken so long? We have clinics like the Mayo clinic, but the NIH is a governmental program and should have had a program like this years ago. With a goal of irradicating future diseases, our government should have been jumping all over this program instead of throwing money at useless wars. Even now, the NIH is very low on funds and this program will remain completely understaffed until the NIH sends more doctors away from their current jobs to this department.
I urge you to write your congressmen and women and tell them what is important to you. Is it more important to kill innocent thousands in other countries while killing many of our own soldiers, than to save hundreds of people a year from the toils they will have to go through living with a not-yet-cured disease? The ball is in your court and we must do what we can to help programs like this. Donate time, money or just write your politicians. Just do something! Thanks for reading and please comment/rate.
Below are links for information on the program:
http://rarediseases.info.nih.gov/files/UndiagnosedDiseasesProgram.pdf
http://rarediseases.info.nih.gov/Resources.aspx?PageID=31
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I agree with you! The NIH is in desperate need of funding. It's pretty bad. Some of the current programs that are in place are being terminated because the government can't afford to keep them, yet we have plenty of money for the war. Bothersome, in my opinion.
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