Mycosis Fungoides

My husband Bryan has suffered from this disease since the age of 8 and he is now 46. It is part of the Non Hodgkins… Continue reading Mycosis Fungoides

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My Journey through TSC (Tuberous Sclerosis Complex)

Where do I start? My names Cortny and I was diagnosed with TSC before birth. Tuberous Sclerosis Complex is a rare multi-system genetic disease that causes… Continue reading My Journey through TSC (Tuberous Sclerosis Complex)

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I have earned my stripes

I am a 42 year old woman with Ehlers Danlos. I also have many of the conditions and problems that go along with EDS including… Continue reading I have earned my stripes

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In 2010, months before closing on our first home and our upcoming wedding, I was rushed to the hospital. That day was life changing. I… Continue reading Taka-What?!?!

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I’m 30 years old and I have hypopituitarism (under active pituitary gland). I have to take several replacement medications for it. I am also visually… Continue reading hypopituitarism

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Clivus Bone Tumor

I was suffering from severe vertigo, blurred vision and headaches which was causing balance issues. I was told it was benign proximal positional vertigo (bppv).… Continue reading Clivus Bone Tumor

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Our Christmas miracle

The story starts as many would – a boy and girl fall in love and welcome a new life to the world. He’s perfect…8 pounds… Continue reading Our Christmas miracle

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My journey to HLRCC

I was 24 when I first started having ‘women’s issues’ I could feel a lump in my lower abdomen and the GP diagnosed Fibroids, eventually… Continue reading My journey to HLRCC

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Gift of life.

I was born with rare genetic disorder Tyrosanemia type two. Living most of my childhood in hospital from 9 mo old til 10. I was… Continue reading Gift of life.

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