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Prader-Willi_syndrome_May_Awareness_Research

Raise Awareness of Prader-Willi Syndrome This May

May 17, 2017

May is Prader-Willi Syndrome awareness month, a time to raise awareness of this not particularly well-known or understood condition. Prader-Willi Syndrome affects around 1 in every 15,000 births and is recognized as the most common genetic cause of life-threatening childhood obesity. It affects both genders and all races equally and is the result of abnormalities with chromosome 15, at conception.

Prader-Willi_syndrome_May_Awareness_Research

It was first formally described and used as a diagnosis in 1956 by a team of Swiss doctors; Dr. Andrea Prader, Dr. Alexis Labhart and Dr. Henry Willi. They found the condition had enough unique, clinical characteristics to be defined as a separate syndrome.

 

 

 

 The main and most typical characteristics of Prader-Willi Syndrome are:

  • Obesity – caused by an overly large appetite, resulting in overeating (hyperphagia), combined with a lower calorie requirement due to lower energy needs.
  • Weak muscle tone, or floppiness at birth, otherwise known as Hypotonia.
  • Dysfunction of the central nervous system and endocrine gland which causes varying levels of learning disability, increased levels of tiredness or sleepiness and poor social and emotional development.
  • Immature development of sexual organs and other sexual characteristics, known as Hypogonadism.

Prader-Willi Awareness Remains Muted

Although it is recognised as the most common obesity-linked genetic disorder, awareness of Prader-Willi syndrome isn’t wide-spread. Sufferers also feature and lend their support in rare-diseases month, but May is the month that sufferers and supporters spend raising awareness exclusively of this condition.

Meal-planning and behaviour management are the main aspects of family life that are affected when a family member is diagnosed with Prader-Willi syndrome. One way families with children who have the condition can help to raise awareness all year round, is by giving their child a card explaining they have Prader-Willi syndrome and what that means.

Special_Kids_Prader-Willi_syndrome_May_Research

'One Small Step' for research

The slogan for Prader-Willi awareness month in 2017 is ‘one small step’ and refers to taking a small step further into research of the condition. Across America, a number of events have already taken place including a t-shirt sale and a walk to raise money and awareness.

There’s also a month-long virtual awareness event where participants can raise money for every step or walk they do in support of Prader-Willi awareness month. In addition, there are other online events, allowing people all over the world to join in, raising awareness of this common, yet still relatively little known or understood syndrome.

If you’re keen to take part in event, raise money, or host your own event, there are still plenty of options available. The simplest way is to start your own fundraising page and update it with the activity/miles/steps you take.

However, if you want to do something a little different, there are other options. They include:

  • Holding a bake sale.
  • Selling some unwanted toys and clothing at a car boot sale and labelling it as a stall for Prader-Willi syndrome awareness.
  • Do a sponsored silence.
  • Holding an afternoon tea or park picnic event.

You could keep it small and limited to friends and family, or go bigger and encourage wider participation as part of a larger event. The choice is entirely yours and any option will help raise awareness of Prader-Willi syndrome that affects many people around the world.

 

Additional resources

http://www.pwsa.co.uk/

http://www.ipwso.org/

http://www.nhs.uk/conditions/prader-willi-syndrome/Pages/Introduction.aspx

https://www.cafamily.org.uk/medical-information/conditions/p/prader-willi-syndrome/

http://www.grettonhomes.co.uk/

https://www.justgiving.com/praderwilli



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