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Living with PVNS

I have a tumor called Pigmented Villonodular Synovitis or PVNS for short. Is a very rare, random, aggressive tumor that occurs in joints. Mostly in… Continue reading Living with PVNS

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Hereditary Heamorrhagic Telangiectasia / osler webber rendu

Traceys story: In 2005 when our daughter (Jessica) was 7 years old when she collapsed at school. She had complained of a headache to her… Continue reading Hereditary Heamorrhagic Telangiectasia / osler webber rendu

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Hereditary Heamorrhagic Telangiectasia / osler webber rendu

Traceys story: In 2005 when our daughter (Jessica) was 7 years old when she collapsed at school. She had complained of a headache to her… Continue reading Hereditary Heamorrhagic Telangiectasia / osler webber rendu

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Sphincter of oddi dysfunction

After having my gallbladder removed in Feb 2014 my symptoms got worse. I was then diagnosed with sod. My body cannot cope with the bile… Continue reading Sphincter of oddi dysfunction

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More than just flexible

I am very lucky that my case is considered mild. I’m able to live a very full and active life that I share with my… Continue reading More than just flexible

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Our Barth Journey

My first son, Nathaniel, was born September 9, 2002. He appeared very healthy and we couldn’t wait to get him home. At Nate’s one-week doctor… Continue reading Our Barth Journey

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Ataxia telangectasia …

Valentina is a 10 yr old who has Ataxia telangiectasia (A-T) (also referred to as Louis–Bar syndrome ) is a rare, neurodegenerative, Autosomal recessive, inherited… Continue reading Ataxia telangectasia …

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Mast cell activation disorder

I was a normal 43 yr old full time dental assistant,for 26 years … full of energy , loved to socialize with my friends until… Continue reading Mast cell activation disorder

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Hereditary Heamorrhagic Telangiectasia / osler webber rendu

My name is Sara Violante and HHT runs through my mothers side of the family as we discovered 10 years ago. I am the eldest… Continue reading Hereditary Heamorrhagic Telangiectasia / osler webber rendu

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