Hemochromatosis Foundation Of Central New York

If you have been diagnosed with hemochromatosis, we would like, very much, to hear from you. Our greatest concern is whether you were properly diagnosed before or after any organ damage had occurred. Did you suffer a heart attack before being diagnosed? Were you informed that you had diabetes or cirrhois of the liver before or after you were diagnosed? What (finally), prompted your physician to run tests for hemochromatosis?-These are only a few of the many questions we would like to get some feedback on.                                      We fully understand that you had many questions after being diagnosed.-Most likely the first being: "I've got hemo-what??"-You had never heard of this thing called hemochromatosis, so it was a bit surprising (even frightening),to learn you had it.    Your physician explained to you what this disorder is all about, possibly recommended a special diet, and now has you going for phlebotomy treatment. For many, being diagnosed with hemochromatosis (prior to any organ damage), is not such a bad deal.- It is actually a blessing in disguise. For others, however, the diagnosis can lead to a great deal of frustration.-Especially in cases where the proper diagnosis came too late. In these cases the question becomes: Why? - Why wasn't I diagnosed earlier? For many, the failure of simple testing being conducted (in a timely manner), becomes a mind-boggling experience. We have spoken with numerous hemochromatosis patients who were under the care of the same physician for more than ten years, while exhibiting signs/symptoms of hemochromatosis, yet were never tested for the disorder.-Many of these individuals have sought malpractice claims.

Well...we would like to hear your story or any input, so please contact us @ 315-516-2502 or email: hemochromatosis_cny@yahoo.com