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A Blessing – A Struggle; Living with Tetrasomy 18 P

At the ripe old age of fifty, the “shock” of learning you are having a baby pales in comparison to the moment when the doctor… Continue reading A Blessing – A Struggle; Living with Tetrasomy 18 P

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My Angry Rant for Rare Disease Day / Autoimmune Disease Month

http://whatyourdonotknowbecauseyouarenotme.blogspot.com/2016/03/my-angry-rant-for-rare-disease-day.html February 29, 2016 iwa Rare Disease Day. I think, I hope, it’s just a coincidence that it’s leap day. But maybe that’s more appropriate… Continue reading My Angry Rant for Rare Disease Day / Autoimmune Disease Month

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A Rae f Hope

Being the only patient in America with my (as of now) nameless and extremely rare disease, I can only hope that one day they name… Continue reading A Rae f Hope

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Colloid Cyst of the 3rd Ventricle

3 in a Million…that’s the odds of having this thing….this thing I had in my head. 10 years ago I had no idea what lie… Continue reading Colloid Cyst of the 3rd Ventricle

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I have Idiopathic Granulomatous Mastitis or GM or IGM

This breast disease is so rare that only around 700 woman world wide have it. Few doctors know about it and even fewer have ever… Continue reading I have Idiopathic Granulomatous Mastitis or GM or IGM

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My beutiful warrior; my hero; my son

Hello! My name is Maria and I am the mother of four beautiful kids. Three healthy girls and my baby boy who is now 11… Continue reading My beutiful warrior; my hero; my son

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me looking so beautiful

Diagnosis: chromosome 12 deletion and learning disabilities. I also have Perthes disease in her left hip – leg length discrepancy and contracture 5th finger in… Continue reading me looking so beautiful

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Primary Cilia Dyskinesia (PCD), The disease nobody has heard of.

The year is 2006 and my mom reprimands me for not having taken my medication, I burst into tears and tell her that I do… Continue reading Primary Cilia Dyskinesia (PCD), The disease nobody has heard of.

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A Bump In the Road

It’s Rare Disease Month and I was asked to share my story as a way of raising awareness and thereby encouraging more research on rare… Continue reading A Bump In the Road

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