May is Prader-Willi Syndrome Awareness Month: Spreading Rare Disease Awareness

The month of May is recognized as Prader-Willi Syndrome (PWS) Awareness Month, and May 27th is International PWS Day. This is a time to spread awareness about this rare disease among the medical field and the general public. The Prader-Willi Syndrome Association USA is playing their part this year to help get people involved. Keep reading if you want to learn about how you can participate in spreading awareness.

About Prader-Willi Syndrome

Prader-Willi syndrome is a genetic disorder which is most characterized by childhood obesity that results from an abnormal, insatiable appetite. This obesity often continues into adulthood. In most cases, the syndrome is caused by the deletion of a certain section of chromosome 15. In about a quarter of cases, the patient receives two copies of chromosome 15 from the mother but gets none from the father. This syndrome is not considered heritable, as the genetic changes occur during gestation. Symptoms of Prader-Willi syndrome include slow development, poor feeding, muscle weakness, obesity, over-eating, abnormal flexibility, scoliosis, sleeping excessively, speech delays, intellectual disability, poor muscle tone, delayed puberty, and infertility. Excessive eating also leads to elevated risk of diabetes. Management may include physical, occupational, and speech therapy, limiting access to food, and injections of growth hormone (in child patients only). To learn more about Prader-Willi syndrome, click here.

This year, the association has added a new page to their website called 15 Ways to Raise Awareness for PWS. This is a great resource that makes getting involved in Prader-Willi Awareness Month really easy. Some of the ways include:

  • Raising your voice: Find your elected officials and ask them to support legislation relevant to rare disease patients.
  • Be a PWS ambassador: Volunteer to speak to a local school, library, or other community organization about PWS.
  • Share your story: With the help of a friend or family member, record your own PWS patient story to share with the public. You can post it to the Share Your Story page or email the video to [email protected].
  • Share the PWS Facts Toolkit: PWSA USA has put together a simple Prader-Willi facts kit that you can easily share on social media. Click here to check it out.

These are just some of the ways that you can play your part this year during Prader-Willi Syndrome Awareness Month and International PWS Day on May 27th. Click here for more info.

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