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

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. 

Over the Wall

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

Over the Wall is a holiday camp for children who have a serious illness.

Serious Illness Camp

We invite applications from children who are experiencing, or have recently experienced the challenges of a serious or life threatening condition. This includes, but is not limited to-

  • Respiratory conditions (eg Severe Asthma, Chronic Lung disease)
  • Blood disorders (eg Sickle Cell Anaemia, Haemophilia, Aplastic Anaemia)
  • Cancer
  • Diabetes
  • Gastrointestinal Disorders (eg Crohn’s disease, Colitis)
  • Heart Conditions (eg Congenital heart disease)
  • Immunological Disorders (eg Immune Deficiencies)
  • Kidney Disease (eg Nephrotic Syndrome, Polycystic Kidney Disease)
  • Liver Disease (eg Biliary Atresia, Liver Transplant)
  • Neurological Disorders (eg Epilepsy, Spina Bifida)
  • Neuromuscular Disorders (eg Muscular Dystrophy)
  • Autoimmune Diseases (eg Juvenile Arthritis, Lupus, Dermatomyositis)

Children must be between the age of 8 and 17 when attending our camps. Presently, we only accept applications from children living in the UK. The child must be able to function and participate in a group setting with children of a similar age, and must be able to communicate their needs independently. If the child is in a wheelchair they must be able to transfer independently.

A collection of different holidays for children who have a physical/ learning disability or medical

Website: 
http://www.disability-grants.org/holiday-grants-disabled-children.html
Description

A great link to a collection of opportunities for supportive holidays, grants and adapted accomodation.

This link has a range of different opportunites listed and who is eligable to apply.

Using this link will save you hours surfing the net.

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.