Filters

Pushing through Cushings

I am 33 years old and was diagnosed with Cushings Disease in January of 2011. I underwent three transphenoidal removals of a pituitary adenoma to… Continue reading Pushing through Cushings

Read full story

Dystonia

I struggle with dystonia, tardive dyskinesia from Pharmaceuticals medications from the doctors it’s changed my whole life around and to go from independent to having… Continue reading Dystonia

Read full story

Ashlynn 6 years old, to young to have a short life.

Our Ashlynn is 6, she should have the funnest childhood, play outside and run around like anyone else. Ash she is getting into 1st grade… Continue reading Ashlynn 6 years old, to young to have a short life.

Read full story

Jordan Kubczak

My son Jordan began getting sick at the age of 12. We where in and out of the hospital for many years the Doctors could… Continue reading Jordan Kubczak

Read full story

Regaining hope

When I was first diagnosed with Retinitis Pigmentosa, the words that hit me the hardest were “no treatment” and “no cure.” I basically took those… Continue reading Regaining hope

Read full story

EKV what’s that short for?

My son was born with erythrokeratodermia variabilis, or EKV for short, in the Ichthyosis group of skin disorders. It presents at first with large areas… Continue reading EKV what’s that short for?

Read full story

Never give up the fight

My husband was diagnosed at age 29 with a chordoma clivas. In the last 12 years he has had 7 brain surgeries, 3 plastic surgeries,… Continue reading Never give up the fight

Read full story

Behçet’s: 10 years to Diagnosis

I am a 28 year old nurse living with Behcet’s Disease. I first had severe mouth ulcers at the age of 16 which recurred regularly.… Continue reading Behçet’s: 10 years to Diagnosis

Read full story

Complex Regional Pain Syndrome

Thanks for reading my story. I am 54, female and live in the US Midwest. After hitting the top of my left ankle with the… Continue reading Complex Regional Pain Syndrome

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!