I love someone who is rare

A rare disease is defined when it affects fewer than 1 in 2000 people – statistically speaking that means that around 3.5 million people could be afflicted by the same disease and it would be considered rare.

That is an awful lot of people.

Based on the extrapolation of statistics we have on Rett syndrome, as many as 700 thousand people could be affected by Rett syndrome, a rare disease…

Rett syndrome is awful; although it affects the entire body, it is primarily considered a brain disorder. Among many other symptoms, it affects the ability to walk, breathe and to communicate.

Rett syndrome symptoms include:

  • Loss of speech
  • Loss of motor control
  • Scoliosis and fragile bones
  • Seizures – including Rett episodes
  • Compulsive hand movement
  • Irregular breathing
  • Apraxia or Dyspraxia
  • Extreme anxiety
  • Gastrointestinal issues
  • Impaired circulatory and cardiac function
  • Parkinsonian tremors

TI love someone who is Rarehe last day of February every year is Rare Disease Day. Rare Disease Day is used to highlight Rare Diseases and create awareness in the general public and decision makers, about the impact a rare disease has on the lives of the affected.

We are slowly breaking down the wall created by Rett syndrome, but like many other Rare Diseases, we need you help.

You can help by spreading awareness for Rett syndrome and Rare Disease Day, you can even donate to any one of the excellent charities out there that support Rett syndrome.

Thank you so much for your efforts, we truly appreciate any help we can get.

Rare Disease Day Social Media items

  • Profilomatic* frames here.
  • Timeline/profile information images here.

*Profilomatic is our easy to use tool that helps you make a profile image for either twitter or facebook using your computer or iPad.

To find out more about Rett syndrome, please read this blog.

 

I love someone who is rare

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