Useful links for long term health conditions
Acute kidney injury
Acute kidney injury (AKI) is when the kidneys stop working over a short period of time – a few days or a few weeks. It is sometimes called acute kidney failure (AKF) or acute renal failure (ARF).
Anaphylaxis (pronounced ana-fill-ax-is) is a severe and potentially life-threatening allergic reaction. Learn more about what you can do for your child to avoid them having an anaphylactic reaction or what to do if someone else is having a severe allergic reaction.
Arthritis doesn’t just affect the elderly. Find out more about conditions affecting the bones and joints of children and young people; to hear the experiences of a young person with arthritis, click here.
Brain tumours are quite complex - at present, over 130 different types of 'high grade'(cancerous) or 'low grade' (non-cancerous) brain tumours are known. Find key information about brain tumours in children and young people including symptoms, diagnosis and treatments, and read advice on living with, or caring for someone with, a brain tumour.Save
7 young people are diagnosed with cancer every day in the UK. Your child doesn't have to face cancer alone - find out about cancer types, treatments and living with cancer as a teen or young adult. This information has been written specifically for young people and reviewed by other young people with cancer. Hear the stories of other young people with cancer.
Chronic Fatigue Syndrome
Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn't improve with rest.
For more information on CFS and the Specialist Chronic Fatigue (ME) Service for children and young people anywhere in the UK, please click here.
Chronic kidney disease
Chronic kidney disease (CKD) is a lifelong condition. The kidneys gradually stop working as well as they should. This usually happens over many years.
The Pain Toolkit is for people who live with persistent pain and Healthcare teams who support them. It helps people allover the world self manage persistent pain.
Cleft lip and palate
There are many young people in the UK who are born with a cleft lip or palate. Some of them have shared their stories about everything from school to surgery.
Growing up with coeliac disease, especially in childhood, can have its challenges, especially as children/young people begin to eat out more with friends. Don’t let your child be embarrassed about having coeliac disease; it’s part of them and their friends will understand
Cystic fibrosis(CF) is one of the UK's most common life-threatening inherited diseases. Cystic fibrosis is caused by a defective gene. As a result, the internal organs,especially the lungs and digestive system, become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food. Find out more…
‘Why do I have eczema?’ is a question asked by a lot of children with eczema. Find out more about eczema or listen to the experiences of other young people with eczema and find out how, as a parent, you may be able to answer some of these questions for your child
FSGS and IgM nephropathy
Focal segmental glomerulosclerosis (FSGS) and IgM nephropathy cause nephrotic syndrome. This causes swelling in the body, especially in their face, legs and feet.
Glomerulonephritisis a group of conditions that cause inflammation (swelling) in the kidneys. Children with glomerulonephritis have blood and protein in their urine, and may have swelling in their body, especially in their face and legs. Find out more…
Haematuriameans there is blood in the urine (wee). If there is a lot of blood, the urine may be red or dark brown. In most children, haematuria is not serious. In some children, it is a sign that there is a problem with their kidney and these children may need special treatment. Find out more…
Haemolytic Uraemic Syndrome
What are bleeding disorders? How do you diagnose and treat them? Can there be any complications? These are all legitimate questions for any parent to have. Find out more about haemophilia here.
Click here to read lots of useful information from the British Heart Foundation on heart conditions in children.
Henoch- Schonlein purpura (HSP)
Henoch-Schönlein purpura (HSP) is a condition that affects different parts of the body. Tiny blood vessels in the body become inflamed or swollen.
It’s important for a child with HIV to know that they are not alone. Allow your child Hear the experiences of other young people living with HIV here. You can also find ways of accessing local support for your child as well as the Body & Soul Beyond Boundaries programme.
To watch a video on misconceptions about HIV please click here.
If you have a child with hydrocephalus, click here for more information and advice provided by the Hydrocephalus Association.
Hypertension means that your blood pressure is too high. In some children, hypertension can be a serious condition. It can increase the risk of getting other diseases, especially if the hypertension continues into their adult years. Find out more…
Inflammatory Bowel Disease
Crohn’s Disease and Ulcerative Colitis are the two main forms of Inflammatory Bowel Disease, affecting more than 300,000 people in the UK. Yet it is largely a hidden disease, and one that causes stigma, fear and isolation – it’s thought that many people with the condition go undiagnosed and suffer in silence. It doesn’t have to be like this. Learn more….
Medical ID and alert products
Climb is the leading patient organisation for Inherited Metabolic Disorders, supporting thousands of families worldwide.
Mitochondrial Disease is a chronic, genetic disorder that can be inherited in a number of ways. Because there are many forms of mitochondrial disease and therefore Mitochondrial disease presents very differently from individual to individual.
When a person has Mitochondrial Disease the mitochondria in the cells are not producing enough energy. Sometimes they are not very efficient or they do not work at all. Depending on which Mitochondria are affected will depend on which organs are affected.
Activities like running, swimming, cycling or even simple ones likes walking or breathing can be difficult or completely impossible if you are suffering with Mitochondrial Diseases.
For help and for more information, visit the Abel Foundation website by clicking here.
Bladder problems are not a subject that is openly discussed, hence there is a general lack of public knowledge on what it is like to have Mitrofanoff. Mitrofanoff Support offers emotional support and reassurance to anyone who may be about to have, or already has a Mitrofanoff and the people closest to them.
Multicystic dysplastic kidney (MCDK)
A multicystic dysplastic kidney (MCDK) is a kidney that has not developed normally in the womb. Instead of a working kidney, there is a bundle of cysts, which are like sacs filled with liquid. Find out more…
Living with a neuromuscular condition can be a steep learning curve for both the child and the parent, but support is available. Find out more…
In nephrotic syndrome, the kidneys leak too much protein into urine, leading to a drop in the levels of protein in the blood. This causes swelling in the body,especially in the face, legs and feet. Find out more… About half of children with steroid-sensitive nephrotic syndrome (SSNS) have frequent relapses. This means that although the nephrotic syndrome gets better with steroids, it keeps coming back in a short space of time. Learn more about frequently relapsing nephrotic syndrome.
Neurofibromatosis type 1 is a condition that causes lumps called neurofibromas to grow on the covering of nerves. Although doctors sometimes call the lumps tumours, they are not cancer. This information sheets offers you some facts and advice to help you and your child.
Post-infectious glomerulonephritis (PIGN)
PIGN causes inflammation (swelling) in the kidneys. Children and young people with PIGN have blood and protein in their urine, and may have swelling in their body, especially around their face and legs. Find out more…
If you have a child with a primary immunodeficiency, there are probably lots of questions you’d like to know the answers to learn more here…
Proteinuria means there is an abnormal amount of protein in the urine (wee). Normally there is very little protein that is lost in the urine. Find out more…
Renal dysplasia (or kidney dysplasia) means that a kidney does not fully develop in the womb. The affected kidney does not have normal function – which means that it does not work as well as a normal kidney. It is usually smaller than usual, and may have some cysts, which are like sacs filled with liquid. Find out more…
Renal hypoplasia (or kidney hypoplasia) means that part of a kidney does not fully develop in the womb. The kidney may only be slightly smaller than usual or it may be tiny. Because of its size, it may not work as well as a normal-sized kidney. Find out more…
Advice on what you can do for your child if they have scoliosis or if they have just been diagnosed with it. Find out more…
Sickle Cell Disease
The Sickle Cell Society provide a booklet containing all you need to know about sickle cell disease and how you can help your child. Download it here.
Spina bifida literally means ‘split spine’. A fault in the development of the spinal cord and surrounding bones (vertebrae) leaves a gap or split in the spine. The spinal cord has not formed properly, and may also be damaged. Find out more…
Syncope (pronounced sin-co-pee) is a medical term for a blackout that is caused by a sudden lack of blood supply to the brain. Reflex syncope is one of the most common forms of syncope. Find out more…
Thalassaemia is a complex condition affecting the blood that requires constant monitoring and treatment.
An estimated 1 million people worldwide have TSC. Some will be diagnosed with TSC very early in life whilst others may not be diagnosed until later childhood, adolescence or adulthood. Find out more…
Urinary tract infection (UTI)
A urinary tract infection (UTI) is a common infection that may cause your child pain when they pee. Sometimes it can result in a kidney infection. Find out more…
Von Willebrand Disease
Von Willebrand disease is the most common type of bleeding disorder: it’s estimated that around 1% of the world population may be affected. It affects the blood’s ability to clot and can cause symptoms such as easy bruising, nosebleeds, and heavy periods. It may also be hard to stop bleeding after injury or surgery. Find out more…