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A Kleefstra Syndrome angel

Dear fellow rare-disease travelers, I would like to tell you my experience about Kleefstra syndrome. My name is Katerina and I was the aunt of… Continue reading A Kleefstra Syndrome angel

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Fighting four autoimmune diseases

I was diagnosed with Crohns Disease and Ulcerative Colitis in 1995. Then I was diagnosed with Primary Sclerosing Cholangitis in 2008. I was di

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still undiagnosed and living with the unknown

I’m 19 years old and I have seizures, falls and involuntary jerks. I have no warning I just blackout. I have been on medications which… Continue reading still undiagnosed and living with the unknown

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I am a Miracle!

I was born with a triple whammy in my brain 57 years ago. I was diagnosed just 15 years ago March 1st 2002 with a… Continue reading I am a Miracle!

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My Multiple Auto Immune Fight

Several years ago I had elevated liver enzymes. My internist wanted me to have a biopsy. Since I as going to have some hernia surgery,… Continue reading My Multiple Auto Immune Fight

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Primary Biliary Cholangitis

Disgnosed 10 years ago on Valentines Day after years of fatique, joint pain, itching, digestion issues, quickly fading thyroid, etc. Dr Marshall Kaplan at Tufts… Continue reading Primary Biliary Cholangitis

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ARACHNOIDITIS The Web of Silence

I have Adhesive Arachnoiditis, a rare neurological disease that affects the nervous system all over the body. It is excruciatingly painful and there is no… Continue reading ARACHNOIDITIS The Web of Silence

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Getting a Handle on my Health: Life with Congenital Panhypopituitarism and ONH

I have congenital panhypopituitarism, caused by Optic Nerve Hypoplasia (ONH), also known as Septooptic Dysplasia (SOD). Long words, I know! It took me nearly 20… Continue reading Getting a Handle on my Health: Life with Congenital Panhypopituitarism and ONH

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Priceless

I have been recently diagnosed with a rare skin eating disease. To this day I’m still in shock and still haven’t completely wrap my thoughts… Continue reading Priceless

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