Registered Nurse on a Mission to help others with Syringomyelia

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HELLO EVERYONE!

MY NAME IS BETH NGUYEN RN, CEO OF WORLDWIDE SYRINGOMYELIA & CHIARI TASK FORCE.  I AM 38 YEARS OLD WITH A DIAGNOSIS OF SYRINGOMYELIA, INTRACRANIAL HYPERTENSION, POTS DYSAUTONOMIA, HEART FAILURE, AND PULMONARY HYPERTENSION.  I HAVE A PRIMARY DIAGNOSIS OF SYRINGOMYELIA AND ALL OF MY OTHER COMPLICATIONS OCCURED FROM IT.  I WORKED AS A REGISTERED NURSE IN THE AREAS OF MED-SURG, TRANSPLANT, AND ER FOR 15 YEARS BEFORE I BECAME SICK.  ONCE I DEVELOPED DEBILITATING SYMPTOMS I WENT OUT ON DISABILITY AND WAS NEVER ABLE TO GO BACK TO WORK. 

I DISCOVERED SOMETHING....BATTLING RARE DISEASE IS HARD.  FIRST, IT IS VERY DIFFICULT TO GET CORRECTLY DIAGNOSED....YOU MAY GO THROUGH 15 PHYSICIANS OR MORE AND YOU MAY BE MISDIAGNOSED MANY TIMES BEFORE FINALLY ARRIVING AT THE CORRECT DIAGNOSIS.  THEN, YOU MAY EVEN BE CALLED CRAZY AT SOME POINTS AND HAVE TO GET A PSYCHIATRIC EVALUATION SHOWING YOU ARE NOT CRAZY BEFORE SOME BELIEVE YOU ARE TELLING THE TRUTH ABOUT YOUR SYMPTOMS!  I WANT YOU TO KNOW YOU ARE NOT ALONE!  YOU ARE CERTAINLY NOT CRAZY AND SYRINGOMYELIA IS A REAL DISEASE AFFECTING THE BODY HEAD TO TOE WITH WIDESPREAD SYMPTOMS AND MODERATE TO SEVERE PAIN!  I BECAME DISHEARTENED AT THE LACK OF CONTINUITY OF MEDICAL CARE AVAILABLE FOR PATIENTS WITH SYRINGOMYELIA SO I DECIDED TO DO SOMETHING ABOUT IT!

I FOUNDED WORLDWIDE SYRINGOMYELIA & CHIARI TASK FORCE; A NONPROFIT 501C3 ORGANIZATION TO HELP OTHERS WHO HAVE MY SAME DIAGNOSIS AND TO BRIDGE THE GAP IN THE MEDICAL COMMUNITY.  PLEASE KNOW YOU ARE NOT ALONE AND THERE IS HOPE! 

BETH NGUYEN RN, CEO

WORLDWIDE SYRINGOMYELIA & CHIARI TASK FORCE

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