Redbridge SERC

Cystic fibrosis

Description

  • Cystic Fibrosis (CF) is the most common, life threatening, inherited disease affecting 1:2,500 of the white Caucasian population.
  • It is a rare condition in other ethnic groups.
  • This condition is caused by an abnormal gene on chromosome number 7.
  • The initial symptoms of chest infection, gastro malabsorption, failure to thrive leads to investigation.
  • Children are given a 'sweat test' to detect an abnormal amount of chloride ions.
  • Conclusive diagnosis follows gentic testing.

Fact sheets

Training / Help

Help and support can be obtained from;

  • school nurse
  • hospital specialist
  • Newbridge Outreach team
  • Physiotherapy team

Videos

Screenshot for video: Cystic fibrosis- 10 minute awareness film

Cystic fibrosis- 10 minute awareness film

10 minute documentary final project about a day in the life of a ten year old girl with Cystic Fibrosis

Screenshot for video: Cystic Fibrosis Trust awareness film

Cystic Fibrosis Trust awareness film

This video was made in 2011, to help develop awareness of daily life for a student with Cystic Fibrosis.

Learning Aids

Please offer me a seat badge

Please offer me a seat badge

Available from:

TfL have recently introduced a badge to help Adults and Children who may have difficulty standing/ waiting on all TfL transport. It is designed to be supportive for hidden disabilities and medical conditions. The badges are free- you do notneed…

Illustrations

Stickman Communication

Stickman Communication

Stickman Communications create brilliantly simple cards to help communicate a variety of conditions/ disabilities. They currently cover; * ASD * Sensory overload * Allergies  * Medical conditions  * Bowel and bladder conditions * Hypermobility and EDS * Migraine * Seizures * POTS /SVT * Visual impairment * Mental Health *…
Full Size image

Source: http://stickmancommunications.co.uk/epages/747384.sf/en_GB/?ObjectPath=/Shops/747384/Categories/topics

Frequently Asked Questions

  • What are the symptoms of Cystic Fibrosis?
    • persistent cough
    • shortness of breath
    • excessive amount of mucus and saliva
    • frequent chest infections
    • diarrhoea
    • constipation
    • bowel obstruction
    • poor growth and failure to thrive
    • diabetes
    • enlarged liver and spleen
  • What is the treatment of Cystic Fibrosis?
    • No known cure, although research in recent years into gene therapy is encouraging
    • Treatment developments continually extend prognosis.
    • Regular physiotherapy to clear students chest
    • Antibiotics delivered in several different ways
    • Students have a large amount of medication to take every day. This includes enzyme supplements which aid the digestion of protein and fat.
    • Heart and lung transplants are used with good results.
  • What are the implications for school when supporting a pupil with Cystic Fibrosis?
    • The student may need to do physio during the day- is there a private space for this to be done?
    • Students need to take a large amount of medication during the day, younger children will need supervision, and ensure peers are aware why students are taking the medication.
    • Students may need access to a Nebuliser - is there a private space for this to be administered?
    • Students with CF may have a persistent cough
    • Students may be small in stature- be aware of student's self image / bullying
    • Students can feel tired and lethargic
    • Participation in PE is encouraged
    • Minimise infection risk
    • Extra time in examinations
    • Ensure pupils can catch up after school absences and maintain contact with peers.
    • Teenagers may resist daily regimes and this can severaly effect their health.
    • Access to counselling and pastoral support
    • Delayed puberty
    • Pregnancy can cause serious complications
    • Support for the family given the severity of the condition

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.

Net buddy

Website: 
http://www.netbuddy.org.uk/
Description

Net buddy is an award winning site for swapping tips and information for all aspects of supporting children with special needs.

There are 1000's of tips neatly organised on this site.

On the day I looked there was featured resources to help hairwashing/ hair cutting to be less stressful- some great ideas on the whole site.

Contact a family

Website: 
http://www.cafamily.org.uk/
Description

A UK wide charity providing advice, information and support to parents of all disabled children. 

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.