OFD Type 1, XXX Chromosomes Disorder - Canadian Organiza...

Canadian Organization for Rare Disorders

OFD Type 1, XXX Chromosomes Disorder

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I have Oral Facial Digital Syndrome Type 1 with XXX Chromosomes. It causes fatality to male fetuses, of which I had 9 miscarriages and 1 stillbirth. Diagnosed after last miscarriage through Genetics dept at a large University. At time of diagnosis, there were only 3 other women in the world diagnosed with the exact 2 diagnoses.

I have many different disorders caused from these two disorders. Kidney, lungs, originally Pancreatic Divisum-now only 1 full pancreas after surgery, 2 sets of both baby teeth & adult teeth, bone disorders-osteopenia, late menstruation with early natural menopause, disturbed right pinky finger & right middle toe, polycystic kidney disease. I have had 69 surgical procedures in 69 years of life. Most surgeries performed on my 2 original pancreases, and my multiple miscarriages plus stillbirth.

You can read about this disorder on PubMed.

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