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Monday, May 12, 2014

Did you know that Cushing's KILLS??

This weekend the Cushing's community lost another warrior way too early.  Melinda was only 25 years old, but she had been fighting for her health for a long time.  Last year Melinda almost died, and instead of doctors helping her get a cure from Cushing's they accused her of drug use or trying to kill herself!!  I feel ashamed that as a community we could not do more to help this young woman.  And I feel anger at the medical community that at the best they turned a blind eye and at worst deliberately ignored, gave improper treatment, or denied treatments to this poor young woman.

I understand when lay people don't get the seriousness of Cushing's.  I brush off people's well intentioned remarks of "well at least you don't have cancer."  I get it, cancer is in the news all the time; most people know someone who has been affected by cancer.  I have lost friends and family to cancer, but I also have seen friends go through terrible treatments, but then be cured and go on to live happy, healthy lives.  While I have been sick for more than 10 long years.  And even if I get a cure, there will be residual life-long problems I will have to deal with.  I know many people that suffer with life-long disability from Cushing's and sadly I know people like Melinda, and Sarah before her, and a young man whose name I don't know, and countess others who have lost their life to this terrible disease.

However, I can not abide a medical establishment that does nothing, that turns their back on patients during their deepest need, that refuses to educate themselves and refuses to admit that they might be wrong about how rare Cushing's is, about how to diagnosis, about how best to treat, and worse than anything a medical establishment that finds nothing wrong in fat-shaming and fat-blaming even when it leads to the death of young people!!

I apologize to Melinda, and all the other Cushie warriors we have lost too soon.  I am sorry we could not do more for you.  I am sorry the medical establishment failed you, and I vow to fight for awareness, to fight for recognition, and to fight for a TRUE cure in your name!

So next time I post something about Cushing's, please remember this beautiful face and share the information, you just might help save a life.