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Trigeminal Neuralgia

I have ATN, which is short for Atypical Trigeminal Neuralgia. There is no cure at this time! Find others with Trigeminal Neuralgia on RareConnect, the… Continue reading Trigeminal Neuralgia

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TTP Survivor

Rare blood disease. 3 years in remission

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20 years misdiagnosed

I have Alpha-1 Antitrypsin Deficiency in the lungs. 20 years misdiagnosed by many GOs & specialists. I now feel that as soon as they heard… Continue reading 20 years misdiagnosed

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Lupus anticoagulant

I have Lupus anticoagulant which caused me to have a stroke at age 36. Now I will be on blood thinners for the rest of… Continue reading Lupus anticoagulant

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Neuromielitis optica o enfermedad de Devic

2007: Fue muy triste estar en el hospital por un mes y que después del tratamiento no hubiera resultados, al final los médicos diagnosticaron Sidrome… Continue reading Neuromielitis optica o enfermedad de Devic

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CVID and Rare Therapy Duck

Hi my name is Ashley Scott and I wanted to share my story with you about my sweet therapy Duck, Puff The Duck. We have… Continue reading CVID and Rare Therapy Duck

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United States-PBC

I am 41 years old and was diagnosed with primary biliary cholangitis 2 years ago in April. I wasn’t sick at all or having any… Continue reading United States-PBC

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Alpha 1

Nine years ago I was diagnosed with a genetic condition called Alpha one it actually has a longer name and that it is passed on… Continue reading Alpha 1

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My life with MHE / HME/ MO & Hashimoto’s

Hey my name is Naziha and I’m diagnosed not with one but two rare diseases I have Hereditary Multiple Exostoses (known as HME, MHE or… Continue reading My life with MHE / HME/ MO & Hashimoto’s

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