One of the things I have struggled with the most over the last two years since being diagnosed with ECD is what to call this horrible disease. The rarity of the disease and the general lack of consensus on what exactly the disease is has left me trying to explain to people what I have while having no generally agreed upon term to use.
Then this morning I read this...
Did you read that!!!, "to classify ECD as a cancer". Tears stream down my face as I write this...I now know more about my tormentor then I did just 24 hours ago. I also realize how desperately I needed a name for this disease that I will live with...until the day that it takes me from this earth.
Then this morning I read this...
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| Please visits the ECD Global Alliance for more information. |
Did you read that!!!, "to classify ECD as a cancer". Tears stream down my face as I write this...I now know more about my tormentor then I did just 24 hours ago. I also realize how desperately I needed a name for this disease that I will live with...until the day that it takes me from this earth.
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