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Facing the unknown with PBD

I want to share the story of our beautiful daughter, Fynlee. I hope to share what life is like when faced with a disease you… Continue reading Facing the unknown with PBD

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I have AIP, it does not have me.

My name is Jessica and I have Acute intermittent porphyria. When I was twelve, I was bitten by an infected mosquito and contracted Spinal Meningitis… Continue reading I have AIP, it does not have me.

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What I Thought Was the Flu…

I thought I had the flu, and after several days in my local hospital, I was told I had terminal lung cancer. After a second… Continue reading What I Thought Was the Flu…

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Misophonia

My daughter suffers from Misophonia. She struggles with the way I pronounce the letter “S” in any word. Therefore, it’s been almost impossible to have… Continue reading Misophonia

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Misophonia

My daughter suffers from Misophonia. She struggles with the way I pronounce the letter “S” in any word. Therefore, it’s been almost impossible to have… Continue reading Misophonia

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CRPS

My daughter, Natalie, was diagnosed with CRPS in 2017.  Since then she has had periods varying from no pain at all, to being confined to a wheelchair… Continue reading CRPS

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CRPS

My daughter, Natalie, was diagnosed with CRPS in 2017.  Since then she has had periods varying from no pain at all, to being confined to a wheelchair… Continue reading CRPS

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I was born this way!

I was born with Tuberous Sclerosis Complex. My mother passed it on to me and my brother without knowing. She never really had any symptoms.… Continue reading I was born this way!

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Living With CREST Syndrome

I was diagnosed with CREST Syndrome in October of 2017 right after my 19th birthday. CREST, also known as Limited Scleroderma, is a rare autoimmune/connective tisssue disease. It’s… Continue reading Living With CREST Syndrome

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