Help for Carers > Illnesses, conditions and disabilities > Other diagnosed conditions

Other diagnosed conditions

The range of conditions and difficulties experienced by people being cared for is extremely long. Whatever the condition, help and support is available via the West Sussex Carers Support Services, and in many circumstances from an organisation set up to support people coping with a specific illness or condition, such as:

Ankylosing Spondylitis

www.nass.co.uk - National Ankylosing Spondylitis Society (NASS) website

Arthritis

www.arthritiscare.org.uk - Arthritis Care aims to empower people to take control of their arthritis and their lives
www.arthritiscare.org.uk/peoplelikeus - video diaries from people with arthritis
www.kidswitharthritis.org - for parents and professionals, with peer-reviewed and other articles and factsheets

Asperger's Syndrome

www.aspergerinfo.com - online community resource operated by its members who either live with AS themselves, or have a loved one or friend with AS

Asthma

www.asthma.org.uk - the National Asthma Campaign's website gives information about asthma and the work of the charity

Autism

www.nas.org.uk - National Autistic Society (NAS) includes information about autism and Asperger syndrome, and about the support and services available in the UK
www.asdfriendly.org - community of parents and carers of people with autism and Asperger's Syndrome
www.differentworlds.org.uk - support group for parents, family members and carers of children, young people and adults with autistic spectrum disorders
www.researchautism.net - charity dedicated to research into interventions in autism, carrying out independent research into new and existing health, education, social and other interventions. The website is aimed at anyone with an interest in autism, including people with autism, parents and carers, service providers and policy makers

Cancer

http://info.cancerresearchuk.org/news/podcast - each podcast lasts 15-20 minutes and is suitable for all ages
www.mariecurie.org.uk - short films from Marie Curie Cancer Care for patients with cancer and their carers. The films focus mainly on helping a person with their personal care, helping them to move, and supporting them with everyday living
www.cancerresearchuk.org - the Cancer Research UK website is for anyone who wishes to know more about cancer, or to play a part in their vision to cure cancer faster
www.clicsargent.org.uk - charity supporting children and young people with cancer and their families
www.macmillan.org.uk - Macmillan Cancer Support helps improve the lives of people living with cancer and their families and carers
www.cancervive.org.uk - self-help group for family, friends and colleagues of cancer patients
www.bowelcancer.tv - advice for anyone affected by bowel cancer, including symptons and prevention
www.ovacome.org.uk - support organisation for anyone affected by ovarian cancer

Cerebral Palsy

www.speakingforourselves.org.uk - monthly podcasts from people with cerebral palsy
www.scope.org.uk - Scope is a national disability organisation focused on people with cerebral palsy. Runs local services and support

Chromosome disorders

www.rarechromo.org - Unique is a charity that produced information about rare chromosome disorders

Cystic Fibrosis

www.cftrust.org.uk - the Cystic Fibrosis Trust funds medical and scientific research aimed towards understanding, treating and curing Cystic Fibrosis

Dementia

Click on Dementia to go to the Dementia page which has more information

Diabetes

www.diabetes.org.uk - Diabetes UK is a charity working for people with diabetes. They fund research, campaign and help people to live with the condition

Downs Syndrome

www.downs-syndrome.org.uk - Down's Syndrome Association website

Dyspraxia

www.dyspraxiafoundation.org.uk - the Dyspraxia Foundation supports individuals and families affected by this condition

Eating disorders

www.b-eat.co.uk - national charity providing information, help and support for people affected by eating disorders such as anorexia, bulimia nervosa and binge eating
www.eating-disorders.org.uk - National Centre for Eating Disorders
www.eatingresearch.com - information and advice from the Institute of Psychiatry about anorexia, bulimia and other eating disorders. A toolkit has been designed specifically for carers which details treatment and recovery as well as information on how to get help and advice

Eczema

www.eczema.org - the National Eczema Society is dedicated to the needs of people with eczema, dermatitis and sensitive skin

Encephalitis

www.encephalitis.info - the Encephalitis Society aims to improve the quality of life of all people directly and indirectly affected by this condition

Epilepsy

www.epilepsy.org.uk - the Epilepsy Action (formerly British Epilepsy Association) website contains information about epilepsy

Fibromyalgia

www.fibromyalgia-support.net - website and discussion forum, with access to more support and knowledge, including information from a carer's perspective
www.measussex.org.uk information and support and for people and their carers affected by Chronic Fatigue Syndrome across Sussex and Kent

Heart conditions

www.bhf.org.uk/living_with_a_heart_condition - download podcasts for free from the British Heart Foundation
www.bhf.org.uk - British Heart Foundation website
www.congenital-heart-defects.co.uk - website providing information on CHD and raising awareness of the condition

Hodgkin's Disease

www.lymphoma.org.uk - Lymphoma Association website providing support and information

Huntington's Disease

www.had.org.uk - the Huntington's Disease Association offers support, information and advice
www.hdbuzz.net – website detailing relevant research and developments in a non-jargon, easy to read and understand format, written by professionals
www.hdlf.org – HD Lighthouse Family’s American website for families of people with Huntington's Disease details up-to-date research and information

Hydrocephalus

www.sasbah.org.uk Sussex Association for Spina Bifida and Hydrocephalus which provides local services and support

Kidney disease

www.britishkidney-pa.co.uk - British Kidney Patients Association supports kidney patients, their families and carers
www.kidneypatientguide.org.uk - online information for kidney patients and those who care for them

Learning difficulties

Caring for someone with a learning difficulty

Lung disease

www.lunguk.org - the British Lung Foundation provides information and support to people with lung disease

Lymphoma

www.lymphoma.org.uk - Lymphoma Association website providing support and information

Mental health problems

Caring for someone with a mental health problem

Multiple Sclerosis

www.mstrust.org.uk - complementary and alternative therapies podcast
www.mssociety.org.uk - information about caring for someone with this illness from the Multiple Sclerosis Society website
The Young Person's Guide to MS - a 72 page book for children and young people who have a close family member with MS. Available free from from www.mstrust.org.uk

Motor Neurone disease

www.mndassociation.org - the Motor Neurone Disease Association website is a resource for people with the condition and those who care for them

Osteoporosis

www.nos.org.uk - the National Osteoporosis Society (NOS) is the national charity dedicated to improving the diagnosis, prevention and treatment of this fragile bone disease

Parkinson's Disease

www.parkinsons.org.uk/advice/real-life-stories.aspx - real life stories from people with the disease and their families/carers
www.parkinsons.org.uk - the Parkinson's Disease Society provide support, advice and information to people with Parkinson's, their carers, families and friends, and to health and social services professionals involved in management and care

Schizophrenia

Caring for someone with a mental health problem

Spina Bifida

www.sasbah.org.uk - Sussex Association for Spina Bifida and Hydrocephalus which provides local services and support

Stoma care

www.ostomylifestyle.org - information, advice and support on bowel or bladder surgery for patients, families and carers
www.stomacare.org.uk - website for people who have had stoma surgery, their family and carers
www.stomastomata.com - website for people with stoma bags, their family and carers

Stroke

www.brainandspine.org.uk/stroke
www.stroke.org.uk - the Stroke Association is the national organisation for people who have had a stroke and their families


This list is far from complete. You may be looking after someone with an illness not listed here.
If the condition is very rare you may get help and advice from the Rare Disorders Alliance www.cafamily.org.uk which provides information to help provide care for someone with a rare disorder.

You can get more information from:

For more information on organisations that may be able to help with specific concerns:
Call the ICIS enquiry line for help by telephone 0800 859929 (open Mondays to Fridays 10am-12.30pm and 1.30pm-4pm)
Fax: 01903 777601
email: enquiries@icis-info4life.org.uk

Or visit the ICIS website website

There are people who can help:

West Sussex Carers Support Services

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