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Cushings disease leading to Addisons

My story started as many as 7 or 8 undiagnosed years ago. Silly, Small symptoms, that went unnoticed, that were brushed under the carpet, and… Continue reading Cushings disease leading to Addisons

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Moj sin boluje od 2 retke bolesti

5 god lutanja i trazenja odgovora za stanje mog sina,konacno imamo odgovor.Radjena je genetika i otkriveno da on ima dva sindtoma Teacher collins sindrom3 i… Continue reading Moj sin boluje od 2 retke bolesti

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Ser grandes es cuestión de actitud.

Soy Fernanda Quiroz Reina Nacional de la Inclusión de Ecuador tengo 35 años y tengo una hermosa familia. Soy madre de Camila de 17 años… Continue reading Ser grandes es cuestión de actitud.

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The Answer is in the toes!

Isla was my first child, a 8lb healthy baby. However, I noticed her bent big toes and it was noted she had congenital bunions. We… Continue reading The Answer is in the toes!

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Denys-Drash Twins

In 2021 I found I was expecting twins Mateo and Matias. It was a overwhelming and exiting news,by 15 weeks gestation we found out Mateo… Continue reading Denys-Drash Twins

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VIVIR EL DIA A DIA

Mi nombre es Bethania; soy mama de Jesús de 3 años de edad, nace siendo un niño completamente sano y al cumplir el año de… Continue reading VIVIR EL DIA A DIA

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My journey with Nail Patella Syndrome and rare neurological conditions

As someone who lives with a number of rare conditions, including Nail Patella Syndrome, Idiopathic Intracranial Hypertension, Nervus Intermedius Neuralgia, Glossopharyngeal Neuralgia, and Trigeminal Neuralgia,… Continue reading My journey with Nail Patella Syndrome and rare neurological conditions

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See My Specialness

My story is a quick and simple one. I found out that I had Smith-Magenis Syndrome in April of 2016 after being diagnosed with epilepsy… Continue reading See My Specialness

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My rare world

We fly like butterflies – Let’s sting like bees Rare Disease Day is just around the corner! As February 28 approaches, I have more and… Continue reading My rare world

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