Pseudomyxoma Peritonei (PMP)

I had felt unwell for a good while. I have ME and so I put it down to that. I’m 54-is it the menopause? I… Continue reading Pseudomyxoma Peritonei (PMP)

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After 30 yrs of weight issues and hypoglycemic and hyperinsulinemic episodes, I learned through a endocrine researchist that I had non-insulinoma pancreatogenic hypoglycemic hyperinsulinemia, which… Continue reading Nesidioblastosis

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My story is very short. I have been living with 3 diseases for years 2 of them are rear one is Hydroxyprolinemia & Ehlers-Danlos (Fibromialgia… Continue reading pain

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Progressive Supranuclear Palsy

My name is Craig Smith and i live in Adelaide South Australia. On February 12th 2013 at the age of 83 my Dad Jeff passed… Continue reading Progressive Supranuclear Palsy

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Adhesive Arachnoiditis

I have developed adhesive arachnoiditis after having a tumor and an arachnoid cyst removed from my spinal cord, because they were compressing on the spinal… Continue reading Adhesive Arachnoiditis

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Living with Schnitzler’s Syndrome

My Name is Kate-Lynn Bagley. I’m 30 Years Old and i’ve been ill for 4 1/2 Years. I have an Ultra-Rare Disease called “Schnitzler’s Syndrome”… Continue reading Living with Schnitzler’s Syndrome

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Our angel Alex

August 18 2000 the nursery nurse brought me my baby boy and said to me I have held a lot of babies but there’s something… Continue reading Our angel Alex

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How Many Rare Diseases Can Affect A Person’s Life?

My story starts when I was around 6 years old I was diagnosed with Legg-Calvé-Perthes Disease a rare disease of the hips. I had to… Continue reading How Many Rare Diseases Can Affect A Person’s Life?

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45 years of waiting for a full diagnosis

My journey began at 18 with a series of collapsed lung episodes which eventually were recognzed as coinciding with my menstrual cycle. It took several… Continue reading 45 years of waiting for a full diagnosis

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