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Unleash. Believe. Shine.
My name is Ruhan Adendorff , I’m 34 years old , and I have a rare condition called Sotos Syndrome . I want to share my story with the world to spread motivation, encouragement, and Sotos love to all my wonderful Sotos people across the globe. My Journey with Sotos Syndrome I was diagnosed with Sotos Syndrome when I was five years old . Growing up as a child with Sotos was not easy. In fact, it was very hard. At school I was bullied and made fun of. People would say things lik
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When the System Says No: A Mother’s Plea for Fair Treatment
From the moment Luke was born, he would scream and scream. All his milk would come back up, and he began to refuse the breast. We tried formula, but the same thing happened. He was hungry, would try to drink, then pull away and cry. I was told it was colic. I was told he was being “naughty” and that it was behavioural. I was told it was allergies. We saw a gastroenterologist when he was 14 months old, and she performed a scope that confirmed EoE. It is a delayed reaction alle
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Epidermolysis Bullosa Awareness �
When Aiden was born, we had never heard of Epidermolysis Bullosa (EB). The condition causes severe blistering and shearing of the skin. Aiden’s first blisters appeared when he was just five days old. Our doctors here were at a loss. He was treated with antibiotics because they believed it was an infection. We eventually got an appointment with a specialist dermatologist when he was eight months old. A skin punch biopsy was taken from his hand, and that’s when the diagnosis of
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