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
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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
I was a mother of two teen girls and I drove a mini van full of teenagers to the mall frequently. We went to Swim… Continue reading I Have CRPS and I am Aware that I am RARE
My life changed in an instant. 32 years old, mom to 5 kids aged 2-13, business owner, married mom. Our newspaper business had just gotten… Continue reading I am a Zebra and then Rare Disease Community is My Herd