I gave birth to the most amazing little girl on August 31st, 2016Â at 11:51 PM. She weighed 7 lbs 10.5 ounces and was 21 inches… Continue reading Rare Beauty
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The countdown to Rare Disease Day 2019 has officially begun. The 12th edition of Rare Disease Day will take place on 28 February 2019. The… Continue reading 100 days until Rare Disease Day 2019!
Ocular Melanoma (OM), two words I had never heard together before September 2009. The purpose for sharing my story is to educate people about Ocular… Continue reading The light
In May of 2006 I was playing hand ball with my little girl in our apartment complex. The symptoms came on all at once and I… Continue reading GBS/CIDP/LUPUS WARRIOR
Guillain-Barre Syndrome (GBS) is a rare neuro illness that affects one in every 100,000 people in the UK. It is so rare very little research… Continue reading GBS Tries To Fight you…But You End Up Fighting GBS
Mother of two, Magdalena, speaks about how a rare eye condition Autosomal Dominant Retinal Dystrophy, affects the lives of both her son and husband. Â The… Continue reading Living with a rare eye disease
When my son was born, Â they toom him away from me and my husband and sent him to the special children hospital nicu ward as… Continue reading My Rare son, my light my moon my life.
My story started while I was vacationing in Thailand, visiting my friend Peter. Â Â I was 26 years old and it was my first trip all… Continue reading Rare Disease on Vacation
Here is my account of living with a rare disease; Pure Autonomic Failure where my bladder and bowel failed to function normally. Now I have… Continue reading What It Is Like Having a Rare Disease