Ci sono anch'io

By Alessandra, Tuberous sclerosis, Italy, December 6, 2017

Ho 30 anni e ho la sclerosi tuberosa per fortuna in forma lieve .

Apparentemente  sembro una ragazza  normale vorrei un  mondo dove l'ignoranza tra le persone e i medici non ci fosse e che non si venisse  visti come alieni.

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Stories Of The Week

Ivan Borshchevsky, a KS patient Ivan Borshchevsky, a KS patient

Puberty? I've never heard about it. My life with Kallman syndrome.

Ivan Borshchevsky, Kallmann syndrome, Russian Federation, February 23, 2018

I used to be a wierd boy with a wierd appearance: I was (and I still am) fat and loop-eared. Other boys didn't invite me to their games, so I preferred books to humans and became a real bookworm. That...

Living Life to the Fullest with 2 Stoma Bags and a Rare Disease Living Life to the Fullest with 2 Stoma Bags and a Rare Disease

What It Is Like Having a Rare Disease

Rachel Jury, Pure Autonomic Failure, EDS, POTS, United Kingdom, February 17, 2018

Here is my account of living with a rare disease; Pure Autonomic Failure where my bladder and bowel failed to function normally. Now I have a permanent ileostomy and my bladder was removed and a urost...

CORTO MIO FRATELLO ENGLISH SUB LR CORTO MIO FRATELLO ENGLISH SUB LR

Mio Fratello ( my brother) by Giulio Base

Edoardo Giorgio, Hereditary spastic paraplegia, Italy, February 13, 2018

When Edoardo was one year old we saw that something was wrong. He could not walk and when he started walking at 18 months, he walked on tiptoe. We began going to many different doctors and after two y...

UNC Gallery: What Does Being “Disabled” Mean to You? UNC Gallery: What Does Being “Disabled” Mean to You?

Teacher with a Robot Leg

Megan Gress Madlon, Tibial hemimelia, unilateral, United States, February 1, 2018

I was born missing my tibia in my right leg, so my leg was amputated when I was 16 months old. By the age of 2 I had my first prosthetic leg, and I began walking and learning to do all I wanted to do!...

X

Share your story




(To find the english name and more information about your disease, click here)