Linda Asakawa
I am looking for "pen pals" who have hemochromatosis, or who think you may show signs of such. I was dx'd 5 years ago, have been in treatment and am very familiar with the desease; it's cause, symptons and treatment. I would be happy to help anyone out there who may have questions or need someone to share experiences and feelings with. I have been having difficulty locating a "chat room", but it sure would be nice to have people to share with. My name is Linda, I am 53 and live in a small mountain town in So. Calif., and yes, it does snow in So. Calif! If anyone out there is interested in sharing experiences or have questions, or just want to chat please contact me. Being newly dx'd with this "odd" disorder can be a frightening situation without someone who can explain it in non-technical terminology. I know. I was being seen by the hi-tec docs at a very famous Health Center/Hospital and was so frightened and confused. I could not comprehend what the docs were telling me, and they told me very little...simply sent me off to the lab with orders for treatment. I felt like a sheep being led to slaughter. Upon discovering I had iron-overload I was so confused. The doctors didn't seem to want to believe in it, and those who did could not explain it to me in terms (nor would they take the time) that came close to helping me understand what was wrong. I decided to take some medical classes and learn more, focusing mostly on blood...I enrolled in a fast-track 6-week Phlebotomy class. My doctor, for whom I had been volunteering (very small town, only 1 internist, and 1 small clinic), wrote a letter stating that altho I had no formal medical training, I was well versed concerning my condition, and that I would be working closly with him and that he felt that in spite of the fact I had no medical background, he was certain I could fast-tract. So, I became a Phlebotomist and developed an understanding of the disorder and can communicate it in language that we can all understand. I have found that understanding it allows me to cope so much better,maintain a more positive out-look, makes me feel far more secure, and in control. The best part tho, is simply being able to talk with a patient who has crazy on-going health problems, can't get over depression, always tired, and cannot feel better for any length of time. Just knowing the correct questions to ask has led my doctor's office to test and identify this disorder on several people, and we test total iron and ferritin almost automatically. I, myself, have on several occassions after interviewing patients, have suggested to the doc that the ferritin should be tested...what a great feeling to be able to identify the illness after some people have been suffering for years with no relief. Even outside of the office, I have listened to people talking about how they feel awful and the doctors can't find anyting wrong, asking a few simple questions, then suggesting that they be tested. Once, just talking to a girl beside me on the airplane who complained about how tired she always was, telling me that her doctor told her to start taking iron pills! I asked the right questions to which she answered exactly right, including the fact that her father died of cirrhous of the liver at only 40! That her older brother died of the same thing at only 35...non drinkers, no less. I continued asking the right questions and continued getting the correct answers as to her various symtons, even asked her to take off her jacket and let me observe the back side of her upper arms for bronzing. I had no doubt!! I made her a list of the proper lab tests, and told her to see a hemotologist immediately. We exchanged business cards, and 2 weeks later she called...she had tested positive, as had her children and grandchildren. I have no words to express how good it felt, a perfect stranger who had been suffering for years, and I helped save the lives of an entire family for generations to come. Having the ability to help others, while at the same time allowing me to receive feedback from others has been more rewarding than I have words to express. I now understand what keeps good doctors going day/night. There is no better feeling that with just a little bit of knowledge and taking a little time out to ask questions...it sometimes seems as though it happened to me for a reason, and perhaps that reason was to help others get through this and not feel like they are alone. So please, if you want some answers, just need to chat,share experiences (I know I do) contact me. I would love to hear from anyone who would like to chat!