One of the difficulties of having ECD in the beginning was how to explain it to people. Try talking to your boss about how you rare histiocytic disorder requires you to go to the doctor 5-10 times a year and you'll watch their eyes glaze over. Try explainning it to a friend or a family member and you soon find yourself trying to compare ECD to things they might know like autoimmune disorders. The thing is though it always felt like I had cancer but in an effort to be precise I always tried my best to avoid calling ECD that.
The good news though is that the World Health Organization headquartered in Geneva, Switzerland has reclassified Erdheim-Chester Disease as a histiocytic neoplasm. This means the rare disease is now considered a slow-growing blood cancer that may originate in the bone marrow or a precursor cell.
This is great news for two reasons. First, it make it much harder for my insurance company to deny me access to whatever treatment my doctor suggests. Second, it make explaining my current health condition MUCH easier and anything that makes my life easier is a blessing.
The good news though is that the World Health Organization headquartered in Geneva, Switzerland has reclassified Erdheim-Chester Disease as a histiocytic neoplasm. This means the rare disease is now considered a slow-growing blood cancer that may originate in the bone marrow or a precursor cell.
This is great news for two reasons. First, it make it much harder for my insurance company to deny me access to whatever treatment my doctor suggests. Second, it make explaining my current health condition MUCH easier and anything that makes my life easier is a blessing.
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