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Moebius Awareness Day, January 24th, 2017

Moebius Awareness Day, January 24th, 2017

January 23, 2017

January 24 is Moebius Awareness day. It gives those who suffer from the condition an opportunity to educate others on it, and to show the world that, despite the physical differences it can cause, they’re just like everybody else.

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But, with an estimated 1 in 50,000 to 1 in 500,000 children born with Moebius, it isn’t a well-known condition. That’s why we want to share some details on the condition and Moebius Awareness Day with you, in our blog.

Typical Physical Characteristics of Moebius Syndrome

  • People with Moebius syndrome cannot smile or frown.
  • They often can’t move their eyes from side to side.
  • Limb abnormalities are also common, with club foot among the more typical.
  • Respiratory problems are a regular problem with the condition.
  • Speech and/or swallowing disorders can be common.
  • Visual impairments are also associated with the condition.
  • An inability to make eye contact is another common feature associated with Moebius Syndrome.
  • A small chin, small mouth and unusually shaped tongue feature among sufferers.
  • Cleft palate is common and contributes to problems with speech.
  • Up to 30% of Moebius sufferers are also considered to be on the autism spectrum, although this statistic is now being questioned.

There are, unfortunately, other characteristics associated with Moebius syndrome. However, those listed above are among the most common.

Inheritance and Mental Impact of Moebius Syndrome

Currently it would appear that while there are some cases where the occurrence of Moebius Syndrome is within one family, in the majority of cases, it occurs sporadically, with no pattern. This makes it difficult for many families to understand the condition and know how to help their child or family member who suffers from it.

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With regards to the mental impact, there are some instances where those with Moebius Syndrome can have some mental impairment. However, in the majority of cases, Moebius Syndrome is a purely physical and muscular condition and those who have it tend to have ‘normal’ mental capabilities.

Another detail about Moebius Syndrome, is that it is present from birth and is non-progressive. Although, in instances where those suffering from the condition may not crawl or walk at what is considered a ‘normal’ age, they do tend to ‘catch up’.

How to Celebrate Moebius Awareness Day

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Moebius Awareness Day, began in 2010 in order to raise awareness about the relatively rare condition. It is celebrated on January 24, the birthday of Professor Paul Julius Moebius who first diagnosed the condition in 1888.

People who wish to celebrate the day and spread awareness are encouraged to wear purple on January 24 and speak to people about Moebius Syndrome. Some children take great delight in educating their own teachers about the condition each year.

Moebius Awareness day was created by the Many Faces of Moebius Syndrome (MFOMS). That organisation is run by Tim Smith from Virginia, USA, Gavin Fouche from Cape Town, South Africa and Rebecca Maher, from Tampa, Florida. Both Smith and Fouche have Moebius syndrome.

As with many illnesses and disabilities, because if the rarity of the condition, there is much ignorance surrounding it. With the help of occasions like Moebius Awareness Day, there is hope that more people will understand it’s mainly a physical condition and those who suffer with it have feelings too.

To find out more about Moebius and Moebius Awareness day, take a look at some of the links below.

http://www.facialpalsy.org.uk/causesanddiagnoses/moebius-syndrome/

http://www.moebiusresearchtrust.org/

http://moebiussyndrome.org/

http://www.manyfacesofmoebiussyndrome.com/moebius_syndrome_awareness_day_january_24th



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Size Guide

KayCey Size Chart

SIZE CHART
UK(Age) Europeon(up to) US Chest(up to) Body Length(up to) Weight(up to) Tube Access Width
2 96cm/38" 2T 56cm/22" 44cm/18" 18kg/40lbs 8cm/3"
3-4 107cm/42" 3T-4T 60cm/24" 50cm/20" 21kg/46lbs 9cm/3.5"
5-6 116cm/46" 5-6 64cm/25" 54cm/21" 25kg/55lbs 10cm/4"
7-8 128cm/50" 7-8 69cm/27" 58cm/23" 35kg/77lbs 11cm/4.5"
9-10 140cm/55" 9-10 73cm/29" 63cm/25" 44kg/97lbs 12cm/5"
11-12 152cm/60" 11-12 85cm/33" 72cm/28" 54kg/119lbs 13cm/5"
13-14 164cm/65" 13-14 91cm/36" 81cm/32" 66kg/146lbs 14cm/5.5"

 

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