This section contains a list of the common conditions that people in Republic of Ireland and Northern Ireland may be diagnosed with. This is not an exhaustive list and there are many more rare diseases that are not listed here. Where possible we have tried to link to national charities and organisations whose work is orientated towards a specific condition. If you feel that a further condition should be added to this list or if you find any broken links or if you would like an organisation to be included as a link below for a specific condition please contact info@palliativehub.com
Not everyone will receive a diagnosis of what their condition is or it can take many years to actually determine what the condition is.
When your heart’s functions become compromised, this is known as cardiovascular disease, a broad term that covers any disorder to the system that has the heart at its centre. Each heartbeat pumps blood around the body, your body takes oxygen and nutrients from the blood, and it is returned to the heart via the veins. This system is very vulnerable to damage from things we do, like smoking, eating an unhealthy diet or stress. Or, you may be born with a heart condition.
The Irish Heart Foundation
The Irish Heart Foundation is the national charity fighting heart disease and stroke. Their mission is to lead in improving the cardiovascular health of people living in Ireland so they do not experience disability or die from preventable heart, stroke and other blood vessel diseases.
Website: http://www.irishheart.ie
Feature: Helpline
The Irish Heart Foundation in conjunction with the Irish Hospice Foundation have produced a booklet ‘Planning for the Future: Living with Advanced Heart Failure’ to both signpost and prompt discussions you can have with your medical and healthcare team as well as your family so you can be more prepared for the future. The booklet also gives you some practical tips about arrangements you can undertake yourself.
View the booklet here: Planning for the Future: Living with Advanced Heart Failure
NI Chest Heart and Stroke
NI Chest Heart and Stroke supply support groups that provide a listening ear, emotional support and practical advice to people and their families and carers affected by chest, heart and stroke conditions. The groups enable people to meet with others in a similar situation. Their vision is one where everyone can live life to the full, free from chest, heart and stroke illnesses.
Website: http://www.nichs.org.uk/
British Heart Foundation
The British Heart Foundation are the UK’s number one heart charity. They fund thousands of research projects around the UK that are fighting heart disease.
Website: https://www.bhf.org.uk/
Cerebral Palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way).The brain damage that leads to cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities. There is no cure for CP, but treatment, therapy, special equipment, and, in some cases, surgery can help the person who is living with the condition.
Cerebral Palsy Facebook Group
Cerebral Palsy (Ireland) was set up for people who have cerebral palsy, their parents, and friends. it is a forum to share ideas, problems and information.
Website: https://www.facebook.com/Cerebral-Palsy-Ireland-265454886901768/
CerebralPalsy.org.uk
CerebralPalsy.org.uk supports children, adults and their families affected by Cerebral Palsy by offering impartial information on a broad range of subjects that people affected by CP should find useful. Their website is a useful net based resource providing info, help, and advice for those affected by cerebral palsy. We create awareness & campaigning for improvement
Website: www.cerebralpalsy.org.uk/
Chronic pain is a disease of the central nervous system. It is defined as “pain without apparent biological value that has persisted beyond normal tissue healing time” It is also defined as pain that either persists beyond the point that healing would be expected to be complete (usually taken as 3-6 months) or that occurs in disease processes in which healing does not take place.
Chronic Pain Ireland
Chronic Pain Ireland (CPI) is the national charity providing information, education and support services to people living with Chronic Pain, their families and friends. They advocate on their behalf and work closely with stakeholders.
Website: http://www.chronicpain.ie/
Cystic fibrosis (CF) is an inherited chronic disease that primarily affects the lungs and digestive system of about 1200 children and adults in the Ireland. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus. This can clog the lungs leading to serious lung infections; and can obstruct the pancreas from breaking down and absorbing food.
Cystic Fibrosis Ireland
CF Ireland (CFI) is a voluntary organisation that was set up by parents in 1963 to improve the treatment and facilities for people with Cystic Fibrosis in Ireland. CF Ireland also co-operates with medical professionals to give maximum assistance to both parents and children/adults with Cystic Fibrosis. CF Ireland (CFI) is a voluntary organisation that was set up by parents in 1963 to improve the treatment and facilities for people with Cystic Fibrosis in Ireland. CF Ireland also co-operates with medical professionals to give maximum assistance to both parents and children/adults with Cystic Fibrosis.
Website: www.cfireland.ie
Cystic Fibrosis Registry of Ireland
The Cystic Fibrosis Registry of Ireland project was established in 2001 to keep the relevant medical records of each patient with cystic fibrosis in a central database. The patient records are entered onto the computer system (database) by Clinical Research Associates from the CFRI.
Website: www.cfri.ie
The Cystic Fibrosis Trust – Northern Ireland and the Isle Man
Cystic Fibrosis Trust are the only UK-wide charity making a daily difference to the lives of people with cystic fibrosis, and those who care for them. They are working to improve standards of care, from driving up quality to working with clinicians. They also offer practical support through their team of Public Affairs Officers, their helpline, and a range of welfare grants.
Website: http://www.cysticfibrosis.org.uk/
Feature: Forum
HIV (Human Immunodeficiency Virus) is a virus that attacks and weakens the body’s immune system. HIV makes it difficult for your body to fight against infections and cancers that it would normally be able to fight off. If HIV is not treated, the virus may progress to AIDS (Acquired Immunodeficiency Syndrome). AIDS is a disease in which the immune system breaks down and the body is unable to fight off certain infections.
HIV Ireland
HIV Ireland’s vision is to contribute towards a significant reduction in the incidence and prevalence of HIV in Ireland and towards the realisation of an AIDS-free generation. They have information, resources and guidance available on their website
Website: http://positivenow.ie/
ACET (AIDS Care Education & Training)
ACET Ireland is improving the lives of those living with, and affected by, HIV in lreland by playing their part in reducing the number of new cases of HIV in Ireland. They work to break down barriers of fear in Irish Society to deliver projects that seek to change individuals, families and communities for the better.
Website: http://acet.ie/
Positive Life NI
Positive Life supports and promotes positive living for people with and affected by HIV in Northern Ireland and the border counties. Positive Life has been making a difference to the quality of people’s lives for over 25 years, beginning life as the AIDS Telephone Helpline in 1986 and now as a city centre facility offering a range of services and supports expanded across Northern Ireland.
Website: http://www.positivelifeni.com/
Muscular dystrophy (MD) is a group of muscle diseases that weaken the musculoskeletal system. Muscular dystrophies are characterized by progressive skeletal muscle weakness, defects in muscle proteins, and the death of muscle cells and tissue. It can affect both adults and children. There is no cure for muscular dystrophy but there have been huge advances in increasing the quality of life for people with the condition.
Muscular Dystrophy Ireland
Muscular Dystrophy Ireland aims to provide information and support to people with neuromuscular conditions and their families through a range of support services. Their objective is to promote through practical empowerment, independent living for people with the condition muscular dystrophy.
Website: http://www.mdi.ie/
Muscular Dystrophy UK
Muscular Dystrophy UK is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions. They bring together more than 60 rare and very rare progressive muscle-weakening and wasting conditions, affecting around 70,000 children and adults in the UK.
Website: http://www.musculardystrophyuk.org
Progressive Supranuclear Palsy (PSP) is caused by the progressive death of nerve cells in the brain, leading to difficulty with balance, movement, vision, speech and swallowing.
Progressive Supranuclear Palsy (PSP)
PSPA Ireland support people who have or are affected by Progressive Supranuclear Palsy or Corticobasal Degeneration. We seek to make a positive difference to the lives of people with these conditions. The voluntary organisation runs support groups, provides information, and advice to families and healthcare professionals by telephone or email.
Website: pspaireland.ie/
The PSP Association
The PSP Association offers support and information to people living with PSP and CBD, while supporting research into treatments and ultimately a cure for these conditions.
Website: http://www.pspassociation.org.uk/
Feature: Forum
Kidney disease can affect people in various ways, ranging from treatable disorders without long-term consequences to life-threatening conditions. Acute kidney disease develops suddenly, and may go away completely once the underlying cause has been treated. Chronic kidney disease (CKD) does not go away with treatment and tends to get worse over time. CKD eventually leads to kidney failure, described as end-stage kidney disease, or will require a kidney transplant or blood-filtering treatments called dialysis.
Irish Kidney Association
The Irish Kidney Association is a charitable voluntary organisation founded in 1978. They are dedicated to meeting the needs of renal patients and their families and carers, living with and affected by end stage renal disease. These needs are spread across all aspects of life – medical, social and psychological. The profile of the kidney patient ranges from infanthood to the elderly who are undergoing various methods of treatment – haemodialysis, peritoneal dialysis (both CAPD and APD) and kidney transplantation.
Website: www.ika.ie
Northern Ireland Kidney Patients Association
Northern Ireland Kidney Patients’ Association is a charitable voluntary organisation, dedicated to the support of Northern Ireland’s kidney patients, their families and carers. Their association, which has almost 400 members, is self-funding and run by kidney patients, their relatives and friends
Website: https://www.facebook.com/NIKidneyPatients
Respiratory or lung diseases are some of the most common medical conditions in the world. The lungs are part of a complex apparatus, expanding and relaxing thousands of times each day to bring in oxygen and expel carbon dioxide. Lung disease can result from problems in any part of this system.
Irish Thoracic Society
The Irish Thoracic Society (ITS) is the official society for the broad spectrum of healthcare professionals involved in the care of people with chronic or acute respiratory disease in Ireland. Membership of the Society is drawn from respiratory physicians, internal medicine physicians, paediatricians, thoracic surgeons, general practitioners, junior doctors, nurses, physiotherapists, pharmacists, dieticians, pulmonary function and respiratory technicians, scientists and other healthcare providers who specialise or have an interest in respiratory disease and care throughout Ireland – North and South
Website: http://www.irishthoracicsociety.com
COPD Support Ireland
COPD Support Ireland is a charity set up to support all those living with chronic obstructive pulmonary disease (COPD). They are Ireland’s only national COPD support and advocacy body, bringing together local support groups from around the country, to help those living with, and caring for someone with, COPD.
COPD Support Ireland and the Irish Hospice Foundation produced the booklet ‘Planning for the future with COPD’.
Website: http://copd.ie
British Lung Foundation (NI branch)
The British Lung Foundation (BLF) Northern Ireland offers support for people who have lung disease, their families and carers. They raise awareness of lung disease at a local and national level, campaign to make lung disease a priority, and work to improve services across Northern Ireland.
Website: www.blf.org.uk/
Feature: Helpline – Forum
Someone born with spina bifida has an opening in the spine. A healthy spine is closed to protect the spinal cord, which is a bundle of nerves that sends messages between your brain and the rest of your body. Sometimes part of the spinal cord and spine do not develop correctly during pregnancy, leaving an opening where the spinal cord may protrude outside the body.
Hydrocephalus, also known as “water on the brain”, is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Although it does occur in older adults, it is more common in infants.
Spina Bifida Hydrocephalus Ireland
Spina Bifida Hydrocephalus Ireland is a charity that aims to provide information, support and advice to people with Spina Bifida and/or Hydrocephalus, their parents and carers, as well as to promote social inclusion and equality for people with Spina Bifida and/or Hydrocephalus in Irish society.
Website: www.sbhi.ie
Shine
Shine is a community of 75,000 individuals, families, friends, and professionals, sharing achievements, challenges and information on living with hydrocephalus, or spina bifida, and related issues. Working together throughout England, Wales and Northern Ireland, they strive to overcome challenges and achieve the best for you and your family.
Website: www.shinecharity.org.uk
Stroke is a disease of the brain. A stroke occurs when a blood vessel, which is carrying oxygen and nutrients to the brain, bursts or is blocked by a clot. Brain tissue then does not get the oxygen or nutrients it needs. As a result, the affected brain cells is damaged, and this leads to the symptoms a stroke causes. A stroke may affect mental processes such as how people feel, think, communicate, or learn.
Irish Heart Foundation
Provides valuable info about stroke and how it affects both the survivor, the person affected by stroke and their family/friends. It features numerous helpful online resources and also outlines details of stroke support groups across Ireland.
Website: Irish Heart Stroke – Irish Heart
NI Chest Heart and Stroke
NI Chest Heart and Stroke supply support groups that provide a listening ear, emotional support and practical advice to people and their families and carers affected by chest, heart and stroke conditions. The groups enable people to meet with others in a similar situation. Their vision is one where everyone can live life to the full, free from chest, heart and stroke illnesses.
Website: http://www.nichs.org.uk
