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Want to learn more about Joey's condition? Traci posted this on another board.
Hi ladies. You have all heard and Langerhans Cell Histiocytosis from me and Joey's story. Mystery Diagnosis will be doing an episode on Monday August 17 called The Woman Who Saw Pink featuring a young girl who also has LCH. Please tune in and spread the word.
The biggest thing this disease needs right now is awareness. Children often go weeks, months, and sometimes more with no diagnosis because no one knows of this disease or what to watch for. Without awareness, many kids often go undiagnosed until it is either too late or has progressed very far (as was the case with Joey). Without awareness, we have little hope of getting the funding we need to find out what causes LCH and how to improve the prognosis for so many children. And without this information we have little hope of a cure. As it stands there are only a few trials that have been conducted in this disease. And I can name all of them. LCH I, LCH II, LCH III, LCH Salvage, and LCH CNS. All of these trials have been funded by money privately raised by the doctors who have their hearts in this disease and the parents who fight for their childs very life.
Please consider tuning in on Monday and telling everyone about this episide and the impact this disease has on children. I have seen too many children lose their battle with LCH, and Joey was almost one of them.
Thanks to Jaidynsmum for my siggy!
Proud former foster parent to a teen. Waiting on our next call. Proud Aunt to 22.
Proud mommy to 7 angels. Survivor of 4 failed adoptions (5 kids)