• I HAVE HAD STIFF PERSON SYNDROME (SPS )OR STIFFMAN AS IT USE TO BE CALLED, FOR OVER 10 YEARS. THERE WAS AND STILL IS LITTLE KNOWN ABOUT IT. ONE IN ONE MILLION HAVE IT WHICH MEANS ABOUT 350 PEOPLE IN THE US. THERE ARE 13,500 NEUROLOGISTS IN THE US. THAT MEANS IF EACH PERSON WITH SPS HAD ONE NEUROLOGIST THEN 97.4 PERCENT OF ALL NEUROLOGISTS HAVE NEVER SEEN A CASE OF SPS.

    I WAS ON SUPPORT GROUPS, FACEBOOK, AND READ AS MANY ARTICLES ON SPS AS I COULD. ALMOST EVERYONE WANTED A DOCTOR TO KNOW WHAT WAS WRONG WITH THEM AND WHEN THEY DID FIND OUT. WHAT MEDICATIONS WERE NEEDED. THE CRY "WHY DON'T THEY KNOW" CAUSED ME TO DO A STUDY OF 33 PEOPLE WITH SPS. PEOPLE TOOK IT TO THEIR DOCTORS AND MANY WERE HELPED. i HAD MY OWN NEUROLOGIST WHO HAS 6 SPS PATIENTS TELL ME HE LEARNED THINGS EVEN HE DIDN'T KNOW. I FOUND IT TAKES 5.4 YEARS FROM THE START OF SYMPTOMS TO A DIAGNOSES. ALSO IF YOU HAVE ONE AUTOIMMUNE ILLNESS YOU WILL USUALLY GET AT LEAST ONE MORE AND IN MANY CASES MORE THAN ONE.

    i WAS ENCOURAGED BY MANY TO EXPAND THE STUDY. INSTEAD I DECIDED TO DO A FULL BLOWN RESEARCH PROJECT. THERE IS NOW IN PLACE SEVERAL NEUROLOGISTS, AND A MEDICAL BIO STATISTICIAN.

    THE GOAL IS TO HAVE PEOPLE WITH SPS FILL OUT A QUESTIONNAIRE, HAVE THE PHD IN STATISTICS PUT THE INFORMATION IN MEDICALLY ACCEPTED FORM, HAVE THE NEUROLOGISTS REVIEW IT AND DRAW CONCLUSIONS FROM THE INFORMATION. THEN HAVE IT PEER REVIEWED AND PUBLISHED IN MEDICAL JOURNALS. THEN DISTRIBUTE A COPY TO ALL 13,500 NEUROLOGISTS AS FUNDS PERMIT.

    INSTEAD OF TELLING EACH OTHER OUR SYMPTOMS, LET'S TELL THE DOCTORS. NOT JUST FROM ONE OF US, BUT ALL OF US. IMAGINE THE RESULTS. QUICKER DIAGNOSES AND FASTER TREATMENT MEANS BETTER QUALITY OF LIFE AND LESS PEOPLE DISABLED.

    WRITE ME AT john@stiffpersonsyndrome.net or jcrawf6032@aol.com AND I WILL SEND YOU A QUESTIONNAIRE TO FILL OUT AND RETURN. IT ONLY TAKES ABOUT 15 MINUTES. NO NAMES WILL BE USED, ONLY THE INFORMATION FROM THE QUESTIONNAIRE.

    HELP US EDUCATE THE DOCTORS WHO CAN THEN GIVE US THE HELP WE AND OTHERS COMING ALONG WILL NEED.

    THANK YOU

    JOHN