Moeder met een missie

 

Video’s

Enkele video’s van en over medemensen met het Prader Willi syndroom

 

At birth, babies with Prader-Willi syndrome are usually small and floppy, with low muscle tone, and have problems feeding. They may have small hands and feet, and boys may have undescended testicles. The babies are slow to start walking and poor motor skills may persist into adult life.

After about six months to a year, especially as the child becomes mobile, they develop an interest in food that may become an insatiable obsession. Weight gain can be rapid, leading to severe obesity that results in diabetes, strain on the heart, lungs and skeleton, and even early death.

Other symptoms can include:

  • Learning difficulties
  • Short stature
  • Underdeveloped genital organs
  • Behavioural problems

People with Prader-Willi syndrome often have obsessive-compulsive behaviour – they may hoard possessions and show repetitive habits such as picking at skin or hair. They are unsettled by changes in routine and can show unpredictable rages and aggression. Some individuals are more severely affected than others.

Some people have also noticed that children with Prader-Willi syndrome may be unusually blonde and blue-eyed.

 

 

“Zo raar zijn wij niet”,

aldus twee meisjes met het Prader-Willi syndroom op de Achterwerkpagina van een televisieomroepblad.

Prader Willi Syndrome Facts

 

 

Kirsten

 

 

Kirsten is 6 & 1/2 and has Prader-Willi Syndrome. She was a blessing from God and she is loved by and has inspired many.

 

“My Deadly Appetite” – Prader-Willi Syndrome

 

 

Meet William and his family as they wage a courageous battle against Prader-Willi Syndrome. “My Deadly Appetite” premieres November 3, at 10 pm on Discovery Health.

 

Re: “My Deadly Appetite” – Prader-Willi Syndrome

 


 

 

The Foundation for Prader-Willi Research

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Founded in 2003 by parents of children born with this rare genetic disorder, FPWR’s mission is to eliminate the challenges of Prader-Willi syndrome (PWS) through the advancement of research. www.fpwr.org
Missie

FPWR’s mission is to eliminate the challenges of Prader-Willi syndrome (PWS) through the advancement of research.

 

Over faroutofthebox’s channel 

 

My YouTube channel is primarily devoted to supporting others and creating, and supporting those who are also working to create, awareness for Prader-Willi Syndrome and any other syndrome, illness, disease, cancer, ect that our children are faced with or struggling through.

Het Prader Willi syndroom, niet zo bekend bij veel mensen. Daarom willen wij u graag deze beelden laten zien. Iedereen bedankt voor de belangrijke bijdragen. Laat uw reactie hier achter, of schrijf op ons blog wat u denkt dat bij kan dragen. Bedankt voor uw bezoek!

Moeder met een missie would like to express gratidude to all people dedicated to improve the life of those with Prader Willi Syndrome. PLease feel free to comment on my blog.

 

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