Filters

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

Read full story

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)

Read full story

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

Read full story

Taka-What?!?!

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?!?!

Read full story

hypopituitarism

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

Read full story

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

Read full story

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

Read full story

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

Read full story

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.

Read full story
What's your story?

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity!

Share your story

Share your colours

Join the community. Help us build awareness. Share your photos, videos and experiences!