I have a passion for maps and globes. Maybe because I love to travel, or because they help me to dream of other possible lives.
In fact we started #YellowTheWorld, a map on this website where to gather “yellow” stories of accessibility and mobility related to low vision.
Today I want to focus on a particularly interesting map.
With the following mission
Help people with chronic and rare diseases and other syndromes and conditions and spread awareness
Some time ago I wrote an article in which I tried to gather some data about the incidence of Tetinitis Pigmentosa and Usher syndrome in Italy and in the world.
With diseasemaps it would be easy to calculate the number of people with Usher Syndrome and above all you could understand how they are geographically distributed.
It is a kind of voluntary online census in which everyone should pinpoint himself on the planet, adding some data (age, age at diagnosis, sex). Name and surname are voluntary, as you may want to be anonymous or to become adviser, to be contacted by the others and provide assistance and information.
When I stumbled on this website I wondered, is this map showing
A. The distribution of people who use these online toolsa
B. how much people are willing to share their condition
C. South Americans and Russians burst with health.
In the map you can join as
- Person with the disease
- Patient’s relatives and friends
- Health care professional
There are 144 pinpoints in the Usher Syndrome map.
How many are we really in the world?
And who are the people close to me with this syndrome?
Would not it be interesting to find out that someone who lives near you has the same disease and perhaps meet somewhere, to share something, to get to know and help each other ?
Currently the website is in English, Portuguese, Spanish, German and Czech, butanyone can contribhute to translate in other languages.
Meanwhile, I invite you to add your pinpoint to share the message:
We connect people with chronic and rare diseases and other syndromes and conditions using maps. We want to spread awareness about these conditions and show people who suffer them that they are not alone. There are thousands of people living a similar situation willing to help others to find a way to get better.
Yes, because ‘those with Usher Syndrome have always a double chance.