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My daughter’s story

At the age of 10 my daughter was diagnosed with P.A.N.D.A.S (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and affects 1 and 200 children.… Continue reading My daughter’s story

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autoimmune hepatitis

My daughter got sick around the age 2. She been thought hell and back. Test after test.. 1000’s of tubes or blood. 3 three different… Continue reading autoimmune hepatitis

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Caroli disease

I have a disease called Caroli disease. Since being told in 2006 that I have it and surgery in 2006. I learned in February 2013… Continue reading Caroli disease

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H F I is not a childhood disease anymore

I am the oldest person I know of who has HFI. Hereditary fructose intolerance was once thought to be a childhood disease because all known… Continue reading H F I is not a childhood disease anymore

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My experience with hATTR

I am Len Strickland and I was diagnosed with Hereditary Amyloidosis (ATTR) with a variant of Val122ile. There are over 100 different variants of ATTR… Continue reading My experience with hATTR

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What else could go wrong

Well my story began in 2010 when I began having severe back pain and my lower limbs began giving me issues I ignored for awhile… Continue reading What else could go wrong

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Treacher Collins Syndrome

I was born with a craniofacial anomaly called Treacher Collins Syndrome. My characteristics are small, undeveloped ears, small jaw and airway and down slighting eyes.… Continue reading Treacher Collins Syndrome

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Hopeful for a Cure – My Experience with hATTR

My mom, aunt and grandmother all died of Hereditary Amyloidosis. I was about 10-years old when I was first exposed to the devastating effects of… Continue reading Hopeful for a Cure – My Experience with hATTR

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Willmans she ome

Hello my name is Charlotte I got willmans syndrome 23 I got willmans

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