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Dafydd has Dopa Responsive Dystonia

Dafydd was a happy smiley baby and despite a difficult birth (2 weeks early born by emergency C-section) he had no obvious problems. He developed… Continue reading Dafydd has Dopa Responsive Dystonia

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Caz

Back in March our world was turned upside down. I had Cancer. Within 2 days of this we were then told  infact, had a rare form… Continue reading Caz

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ICP devastated our family

I don’t really know what to say other than ICP caused one of my twins to lose his life at 32 weeks.   Its incredibly rare… Continue reading ICP devastated our family

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My sweet little itch

My husband and I had always dreamed of having 3 kids. After having 2 girls, we were unsure about having another after some tough pregnancies.  When… Continue reading My sweet little itch

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Two Rare Diseases

My name is Terry and I have two rare diseases. One is Myelofibrosis which is a rare bone marrow cancer. It causes scaring of the marrow… Continue reading Two Rare Diseases

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Two Rare Diseases

My name is Terry and I have two rare diseases. One is Myelofibrosis which is a rare bone marrow cancer. It causes scaring of the marrow… Continue reading Two Rare Diseases

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Wish Granted: My Son’s Story

Below article from Express Scripts HUB in 2017.  David will be graduating from Purdue University May 2020 with a degree in statistics.  He is a… Continue reading Wish Granted: My Son’s Story

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In sickness and in health

In sickness and in health. My love affair with Dermatomyositis started on the 14th February 2004 aged 22.  Maybe not quite the present I was expecting, and… Continue reading In sickness and in health

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Anti-LGI1 LE & Neuromyotonia

My husband was diagnosed in late 2017 after comments like “It’s just your age – forgetfulness (68) – talk to a psychiatrist; and those are benign… Continue reading Anti-LGI1 LE & Neuromyotonia

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