I just wanted to say...My father was Diagnosed in 1993... he battled ECD for 16 years his courage and spirit and faith will forever be etched in the lifes that he touched, he passed away Nov 21,2009The disiease had Infiltrated his internal organs including both lungs, and the interferon was not as effective as it had been. I will keep you and your family in my prayer!!
I am a unic. NO!! Wait!! I mean, I'm unique. You can read about my "AFFLICTION" in my Blog.
You can go to erdheim-chester,org
and see the technical jargon. But, my particular disease is when histiocytes ( the good guys) become too abundant and lodge in the tissue of organs. They begin to attract lipid cells, which surround the organ like a hard cocoon and stop it. They also like long bones, such as the legs. Before Interferon, a person normally died of congestive heart failure within two years of the diseases onset. The cure remains unknown. I personally am determined to help my fellow "Club" members by educating more of the public about these diseases.
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I just wanted to say...My father was Diagnosed in 1993... he battled ECD for 16 years his courage and spirit and faith will forever be etched in the lifes that he touched, he passed away Nov 21,2009The disiease had Infiltrated his internal organs including both lungs, and the interferon was not as effective as it had been. I will keep you and your family in my prayer!!
Oh he was 50 years old as well when Diagnosed...
Thank you, bekka. I hope I have half the faith and courage your father did. Sounds like a great guy.
Thank you, bekka. I hope I have half the faith and courage your father did. Sounds like a great guy.
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