Viewing 0 reply threads
  • Author
    Posts
    • #17840

      How do you participate in rare disease days? Does it feel like you’re still in a pandemic and bringing awareness to health issues seems uncomfortable or inappropriate at the time?

      I post about what it feels like to be rare or just some valuable hashtags that people can click on and find more information on my social media. I am most appreciative when my family and friends repost information about my rare disease.

      My posts included information on Facioscapulohumeral muscular dystrophy (FSHD). I explained that it is a rare familial disease with an estimated prevalence from 1/8,000 to 1/20,000. It is the third most common form of hereditary myopathy.

      I also added the definition of RARE from the online dictionary in hopes of sparking thoughts and images in followers’ minds.

      /rer/ adjective (of an event, situation, or condition) not occurring very often.

      “A rare genetic disorder.”

      Similar: unusual, uncommon, unfamiliar, out of the ordinary, atypical, singular, remarkable, extraordinary, precious, exceptional, outstanding.

      How does share being rare?

Viewing 0 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account