LUCY
HI CHRISTY, I AM SO SORRY TO HEAR OF YOUR LITTLE DAUGHTER'S PROBLEMS. YOU MENTIONED THE CLEFT PALATE. I DID NOT HAVE THAT BUT APPARENTLY THE ROOF OF MY MOUTH IS ARCHED QUITE A BIT. THEY AT ONE TIME TOLD ME I HAD MARFAN'S SYNDROME BECAUSE ALL OF THESE CONNECTIVE TISSUE SYNDROMES HAVE SIMILAR PROBLEMS. SOME PEOPLE HAVE WHAT THEY CALL A COMBINATION OF CONNECTIVE TISSUE DISORDERS. (THEY FEEL I MAY HAVE IT REALLY) MARFAN'S DEALS WITH THE LENS OF THE EYE, THE AORTIC VALVE, ETC. STICKLERS DEALS PRIMARILY WITH THE RETINAS, THE MITRAL VALVE, ETC MY MITRAL VALVE PROBLEM CAUSED ME TO HAVE CARDIAC ARREST WHEN I WAS 21. THE SUMMER HEAT AND EXERTION BROUGHT IT ON. THE FUNNY PART IS THAT THE VALVE CONDITION WAS SO SERIOUS AND NOW ON AN ECHO MY VALVE IS COMPLETELY FINE AND I AM OFF MEDICATION. SEEMS SOME THINGS SORT OF GO INTO A REMISSION. THE VALVE DEAL CAUSED ME CHEST PAIN, FLUTTERING, WEAKNESS AND PASSING OUT. ARTHRITIS PROBLEMS OFF AND ON HAVE BEEN PRESENT. I HAD A RUPTURED DISC WHEN I WAS 21 ALSO. I HAD A FEW REALLY BAD YEARS FROM 18-23. ALSO DOCTORS AT JOHN HOPKINS TELL ME THAT HEARING LOSS CAN GO ALONG WITH THIS SYNDROME. I HAVE LEARNED TO ENDURE THE BAD TIMES AND LOOK FORWARD TO AND ENJOY IMMENSELY THE GOOD TIMES. HAVE A GOOD DAY. LUCY