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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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I have Scleroderma and Pulmonary Hypertension

I was dx with Scleroderma on June 1996. It took a long time to dx. I was dx with PH in 2013 of April. I… Continue reading I have Scleroderma and Pulmonary Hypertension

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Pseudomyxoma Peritonei (PMP)

I had felt unwell for a good while. I have ME and so I put it down to that. I’m 54-is it the menopause? I… Continue reading Pseudomyxoma Peritonei (PMP)

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Nesidioblastosis

After 30 yrs of weight issues and hypoglycemic and hyperinsulinemic episodes, I learned through a endocrine researchist that I had non-insulinoma pancreatogenic hypoglycemic hyperinsulinemia, which… Continue reading Nesidioblastosis

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