Redbridge SERC

Achondroplasia

Description

  • Achondroplasia is the most common type of short limb (or disproportionately short stature).
  • The condition affects how some of the bones develop, particularly the limb bones and specifically the upper arms and thighs.
  • There can be problems with how some of the facial and skull bones grow, too.

Fact sheets

Training / Help

SEaTSS can support students with this condition.

To refer to SEATSS please use this link:

https://eforms.redbridge.gov.uk/single-point-of-access-referral-form-for-education-support/

Videos

Screenshot for video: Achondroplasia - Carys and George’s Story

Achondroplasia - Carys and George’s Story

Meet 13 year old George and his 10 year old sister Carys. Learn what life is like for them both living with Achondroplasia (sometimes referred to as restricted growth or dwarfism).

Screenshot for video: Achondroplasia - medical overview

Achondroplasia - medical overview

A visually clear short film outlining the medical facts behind Achondroplasia.

Learning Aids

Playing card holder

Playing card holder

Available from: Card holder

Make holding cards easy for little hands with our Circular Card Holders. Spring-loaded rotating wheels make card insertion easy. Once loaded with a card stack, rotate the wheel and the cards fan out. Ideal for any card activity.  Also…

Illustrations

Achondroplasia- photo’s of children who have this condition.

Achondroplasia- photo’s of children who have this condition.

This is a UK based website which has a large selection of photo's of children who have Achondroplasia.
Full Size image

Source: http://www.achondroplasia.co.uk/index.html

Frequently Asked Questions

  • Why does Achondroplasia occur?
    • Achondroplasia is caused by a genetic mutation – a change within a gene. This mutation can occur when the egg or sperm is being formed.
    • It is a random event, but the gene change can also be inherited.
    • Anybody can be born with achondroplasia but, once a person has the condition, it will run in the family and one in two of that person’s children will inherit the condition
  • What are the educational implications for students who have Achondroplasia?
    • Social and emotional development
    • Environmental adaptions- seating, height of pegs, drawers, lockers, positioning of shared items on the table,
    • Care needs- may need to use a step, can they reach the taps independently?, managing steps/ stairs ( follow behind class or go in front), door handles, dresing and undressing,
    • Seating- may need to adapt chair and table height as students grow older, use of foot step, cushion, support when sitting on the floor, backrests on stools,
    • PE- see link to Dwarf Sports Association
    • Bags- use of backpack to support balance
  • Achondroplasia- are there any sports to avoid?

    Each student should be considered on an individually, however the Dwarf Sports Association recommend the following sports are approached with caution and further advice should be sought;

    • Trampoline
    • High jump
    • Long jump
    • Gymnastics
  • Are there any visual signs of Achondroplasia?
    • People with achondroplasia have a normal sized trunk but short legs and arms.
    • The condition mainly affects the growth of the upper arms and thighs.
    • Other signs include a prominent forehead, a sunken nose, crowded teeth and a protruding jaw.
    • The average height of a person with achondroplasia is around four feet.
  • How common is Achondroplasia?

    About one in 25,000 people are born with achondroplasia.

  • Can Achondroplasia be treated?
    • There is no cure for achondroplasia.
    • Infants with achondroplasia often have a curve in the lower spine that might need a brace for the first year or so of life.
    • Some people with achondroplasia develop bow legs. Surgery can straighten them.
    • Others might wish to be considered for leg lengthening treatment. This can add as much as 25-30cms to a child's final height over two to three separate years, but the treatment is difficult and time consuming.

Family Resources

Dwarf Sports Association United Kingdom

Phone: 
01246 296 485
Email: 
http://www.dsauk.org/contact-us.html
Website: 
http://www.dsauk.org/
Description

Regular exercise can make a big difference to the lifestyle and wellbeing of a person who has a dwarf condition. It helps to keep body weight under control, which is paramount in working towards a healthy lifestyle. Keeping weight off and regular exercise can prevent and delay the need for invasive surgery to stabilise back and joint problems.

Below is a list of events which their athletes compete in at either national and Paralympics level or just as a means of exercise

Athletics, Swimming, Badminton, Powerlifting, Table Tennis, Boccia, Football, Basketball, Hockey, Cycling

Other sports
Other sports enjoyed and organised by the DSA regions are: Shooting, Skiing, Archery, Fencing, Ten Pin Bowling, Snow Boarding, Climbing, Outward bound weekends, Canoeing and Sailing.

Idealfit specialist clothes

Phone: 
0203 544 1666
Email: 
.(JavaScript must be enabled to view this email address)
Website: 
http://www.idealfit.co.uk/
Description

Idealfit offers clothes that can be tailor made to fit.

Their website offers a range of ideas and explains their service very well.

This company makes tailoredclothes for adults and children- some great photos to illustrate the products.

The Restricted Growth Association UK

Phone: 
0300 111 1970 - if call is unanswered please leave a message and your call will be returned.
Email: 
.(JavaScript must be enabled to view this email address)
Website: 
http://restrictedgrowth.co.uk/Parents
Description

The Restricted Growth Association UK has a dedicated section for parents.