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

Refer to the following Outreach Service depending upon the primary need;

  • Hatton Outreach Service
  • Newbridge Outreach Service
  • Occupational Therapy
  • Physiotherapy
  • S.E.R.C
  • SALT

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

Virtual protractor

Virtual protractor

Available from: Virtual protractor

This is a great 'virtual protractor' that can be used on a computer to measure angles (these can be generated too). Visually clear and very simple.

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

Net buddy- holiday information pack

Website: 
http://www.netbuddy.org.uk/info-packs/holidays/
Description

Net buddy is a great website- full of ideas, tips and specific information.

They have prepared a great Holiday factsheet that has a very comprehensive list of holidays for students who have special needs.

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.

The Restricted Growth Association UK

Phone: 
0300 111 1970 - if call is unanswered please leave a message and your call will be returned.
Email: 
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Website: 
http://restrictedgrowth.co.uk/Parents
Description

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

Outreach Services

Newbridge Outreach Service

Phone: 
0208 503 8773
Email: 
.(JavaScript must be enabled to view this email address)
Website: 
http://www.redbridgeserc.org
Description

Newbridge Outreach Service provides support to pupils with a range of learning, medical and physical difficulties.

http://www.newbridge.redbridge.sch.uk/introduction2

  • physical disability
  • physical disability with associated learning/communication difficulties
  • dyspraxia and related specific learning difficulties
  • perceptual difficulties
  • fine and gross motor skill development
  • difficulties with handwriting and alternative forms of recording.

Support is provided by

  • providing assessments
  • setting targets for learning / writing individual programmes
  • modify curriculum content and delivery
  • identify and use specialist resources
  • helping to provide support and advice to parents
  • delivering INSET for all staff, other agencies and parents

Request for support should come from the school the pupil is attending or another Agency involved.

Occupational Therapy

Phone: 
020 8924 6111
Website: 
http://www.redbridge.gov.uk/
Description

The Occupational Therapy Team are now based at Redbridge Child Development Centre (0 -19yrs), previously known as The Kenwood Centre in Barkingside.

S.E.R.C

Phone: 
0208 503 8773
Email: 
.(JavaScript must be enabled to view this email address)
Website: 
http://www.redbridgeserc.org
Description

Age range of pupils they support: 4- 19 yrs

Students they support:

  • SERC completes individual assessments for pupils who have complex needs or specific physical disability ( see SERC criteria form on home page)
  • SERC are happy to offer wider advice to support whole school SEN Inclusive ICT provision.
  • Training and support is free to all Redbridge Schools.

Range of support offered:

  • This centre based at Newbridge School, provides advice and support in the use of Information Technology with pupils who have special educational needs or a physical/ sensory disability.
  • S.E.R.C provides individual assessments of ICT needs of individual needs of pupils with SEN, in both mainstream and special schools.
  • Training for teachers and support staff who work with pupils with SEN.
  • Support and advice to parents/ carers of children who have SEN.

Address:                         S.E.R.C, Newbridge School, 258 Barley Lane, Ilford, Essex, IG38XS