PAM WENTZEL
I WAS ALSO BORN WITH EDS. I WAS NOT DIAGNOSED UNTIL MY LATE 30'S. IN THAT RESPECT YOUR GRANDAUGHTER IS VERY LUCKY. I SPENT MOST OF MY LIFE BEING CALLED, "KLUTZY, HYPOCONDRIAC AND FREAK" AND THAT WAS BY MY OWN FAMILY.SHE WILL HAVE TO DEAL WITH A LOT OF MEDICAL ISSUES DEPENDING ON HER TYPE AND SEVERITY. THEY HAVE TYPED MINE AS A 3. I HAVE MITRAL VALVE PROLAPSE, I HAVE HAD HEART FAILURE (PRIOR TO KNOWING I HAD EDS). I HAVE HAD OVARIAN CYSTS AND BREAT CYSTS, MY THYROID REMOVED,I SUBLUXATE ALL JOINTS AND DISLOCATE A MAJORITY. THESE ARE VERY PAINFUL AND CAN MAKE ANYONE FEEL LIKE A "KLUTZ" BECAUSE IT REALLY DOESN'T TAKE MUCH FOR THIS TO HAPPEN. I HAVE ARTHRTIS THROUGHOUT MY BODY, AND AM IN SEVERE PAIN A GOOD DEAL OF THE TIME.YOU NEED TO GET HER TO A GOOD ORTHO, DENTIST, HAVE HER HEART CHECKED, OH ALSO REFLUX IS ANOTHER WONDERFUL PART OF EDS, AS ARE RUPTURES, AGAIN DEPENDING ON HER TYPE. THE WORST THING YOU CAN DO IS PANIC, BECAUSE SHE WILL FEEL IT. IT SOUNDS AS THOUGH YOUR FAMILY IS A KIND LOVING GROUP AND THAT'S EXACTLY WHAT SHE NEEDS.ALSO DO NOT TAKE HER TO A CHIROPRACTOR WITHOUT A PHYSCIAN'S APROVAL. OUR ARTERIES ARE FRAGILE AND THE WRONG CHIRO CAN CAUSE DAMAGE(YES, I HAVE HAD THAT DONE)HER 'BACKWARD KNEES" ARE A SYMPTOM AND MAY TEND TO JUST GIVE OUT ON HER WITHOUT WARNING. MIGRAINES AS YOU MAY HAVE READ ARE ALSO A MAJOR PROBLEM. ALL THESE THINGS ARE WHY YOU NEED A DR. VERY KNOWLEDGABLE IN EDS. PROBLEM IS THEY ARE FEW. IF YOU DON'T LIKE THE FIRST DR. KEEP LOOKING, YOU NEED ONE WHO IS COMPASSIONATE AND CARING. I HOPE THIS HELPS. I KNOW THIS IS ALOT TO ABSORB ALL AT ONCE BUT WITH THE PROPER MEDICAL CARE (WHICH I HAVE YET TO FIND) SHE WILL LEARN TO ADJUST AND YES, EVEN LIVE WITH EDS. GOD BLESS YOU AND YOURS AND WRITE ANYTIME