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my many rare diseases

I started a journey with crohns disease at age 12 then,at about 40 yrs I developed bullious pempgoid of my skin, after becoming better as… Continue reading my many rare diseases

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Hope for Life: Johann’s battle with Biliary Atresia

Johann Mikhail joined our family at 7:41 PM of March 14, 2015, and he was born at 38 weeks through cesarean section. He is a… Continue reading Hope for Life: Johann’s battle with Biliary Atresia

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MHE- Multiple Hereditary Extosis

I have MHE a rare bone disease. I have had over one hundred bone tumors. And over thirty surgeries to remove them. A total elbow… Continue reading MHE- Multiple Hereditary Extosis

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My Gift of Aplastic Anemia

MY GIFT OF APLASTIC ANEMIA “Strike me down and I will become more powerful than you can possibly imagine…” ~ Obi-Wan Kenobi I was born… Continue reading My Gift of Aplastic Anemia

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Hope: Living with Relapsing Polychondritis

Hope: Living with Relapsing Polychondritis By Karla Ramirez One year ago this month my life changed forever. After several years of struggling with numerous seemingly… Continue reading Hope: Living with Relapsing Polychondritis

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I am more than my illness

My story starts with an operation to remove my appendix then progresses to pleurisy and pneumonia in my lungs then after that comes something that… Continue reading I am more than my illness

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Against the Odds

At the age of 10, I started middle school and was a shy girl. I was always the best water for my parents and a… Continue reading Against the Odds

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Arteriovenous Malformation

To raise awareness of my daughter’s untreatable cerebral Arteriovenous Malformation (AVM). Awareness leads to research. Research gives us cures. My daughter deserves a treatment that… Continue reading Arteriovenous Malformation

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My Ovarian Small Cell Carcinoma (Pulmonary Type) Fight

After years of going to the doctors in agony with tummy pains I decided after I had my third child (and left enough time so… Continue reading My Ovarian Small Cell Carcinoma (Pulmonary Type) Fight

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