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Fabry disease by Ludovic

My name is Ludovic I’m 40 I have Fabry’s disease not having had the chance to be like the others being small. I decided to… Continue reading Fabry disease by Ludovic

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our story

Our story Issues with multitasking, excessive activity and restlessness, poor planning and disorganization, lack of focus, issues with memory loss, issues with on-going depression and… Continue reading our story

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Living like every day could be your last!

I have a rare disease that suddenly changed my life. One day I was me Theresa the next I was someone I didn’t recognise, who I… Continue reading Living like every day could be your last!

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Alexander the Great

Alexander was born with a rare, de novo, chromosomal deletion (22q13.3). With a healthy pregnancy it was a complete surprise when he was born with breathing difficulties… Continue reading Alexander the Great

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My Life with AVN

I am 20 years old and have had Avascular Necrosis of the right femoral hip head since I was 7 years old. I cannot remember… Continue reading My Life with AVN

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Cystic angiomatosis

Hi  Im 37 years old and my name is Suzanne. I was diagnosed with a rare condition called cystic angiomatosis 2 years ago.  I see a specialist regularly… Continue reading Cystic angiomatosis

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Cystic angiomatosis

Hi  Im 37 years old and my name is Suzanne. I was diagnosed with a rare condition called cystic angiomatosis 2 years ago.  I see a specialist regularly… Continue reading Cystic angiomatosis

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Desbuquois dysplasia

We have a little son diagnosed with desbuquois dysplasia. We would like to talk to someone with information or just experience.  Please find me on… Continue reading Desbuquois dysplasia

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My autoimmune diseases

Hello my name is Stephanie I’m an autoimmune disease fighter and i wanted to share my story because it’s been a journey for me to… Continue reading My autoimmune diseases

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