Too many rare disorders cause patients not to find the help they need.

 

With hundreds of thousands of rare disorders it is not surprising that so many doctors have never heard of Chiari or syringomyelia. But where does that leave the patients? In many cases, they must become their own advocate, searching the Internet for information. Unfortunately not all information is accurate so you have to try and qualify what you do find.

It was not until the advent of MRI that Chiari and syringomyelia came out of the dark ages. They were both discovered hundreds of year ago but little research occurred and even today what is know is mostly theory. The other issue you may face is having multiple disorders some of which may be related and not. Or the large variety of symptoms that effects people in multiple ways also make one wonder where to look next. These are very complex disorders in some cases at least and unless you are lucky enough to have one of the specialist close enough for regular visit your doctor may become as frustrated as you are.

Unfortunately there are cases that even the specialist has a very difficult time managing. If you have been on any of the many networking sites, you have seen this first-hand. Patients you have surgery after surgery trying to find relief. Where are the answers?

The obviously answer is research. But research takes years and years and millions if not billions of dollars. ASAP is working today and every day to make your life better by bring together doctors who share their knowledge and experience. Developing programs that encourage peer-support. Spreading awareness so that no one has to face the battle alone. We may not have the answers but will keep searching until we do.

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