What is it?
IgA Nephropathy (IgAN) is a common chronic kidney disease which mainly affects young adults. In IgAN a protein called immunoglobulin A (IgA) becomes trapped in the very fine filters of the kidney (glomeruli), causing damage and scarring to the whole kidney.
IgA is normally present in the bloodstream and its main role is to fight infections throughout the body. But in IgAN the body’s immune cells produce abnormally formed IgA. It is not yet known why this happens.
Around 30 per cent of IgAN patients will go on to lose kidney function and will require a transplant or life on dialysis. There are currently no reliable tests available to predict which of these patients, known as progressors, will lose their kidney function.
Symptoms
IgAN may be undetected for several years as it commonly does not cause any obvious symptoms. It is usually detected by chance at the time of a blood or urine test or a check of your blood pressure. Common findings are:
- Blood in your urine (haematuria), which can either be visible to the naked eye or only detectable with a urine test. Visible haematuria often occurs when you have a sore throat, a stomach upset or after exercise.
- Protein in your urine (proteinuria), detectable through a urine test.
- High blood pressure (hypertension)
- High levels of creatinine in your blood. Creatinine is a waste product which can only be removed from the body by the kidneys: the creatinine level in the blood goes up when the efficiency of kidney function drops.
Diagnosis
At present, doctors can only diagnose IgAN by using a medical procedure called a kidney biopsy to take small samples of the kidney away to look at under a microscope.
Blood and urine tests are also used to gauge kidney function.
Treatment
Many people don’t realise they have the condition until it has damaged their kidneys and there is currently no specific treatment for IgAN other than strict blood pressure control.
Current treatments focus on:
- Reducing blood pressure through regular exercise, weight control, and eating a healthy, reduced salt diet
- Reducing protein in the urine by managing blood pressure
- Choosing blood pressure medications which can specifically reduce proteinuria
You may also be offered medications called immunosuppressives which dampen down your immune system.
Your hospital may also invite you to take part in a clinical trial of one of the new drugs being tested to see if they are effective in IgAN.
Possible outcomes
It can be difficult to predict how or if the disease will develop. IgAN is a variable condition, so a number of things could happen:
- It could go away completely (not very common)
- It could stay the same for years
- Your kidneys may slowly lose function
- Your kidneys may fail completely, which could lead to you eventually requiring dialysis or a kidney transplant
- IgAN may recur after a kidney transplant
Help for you
If you have been diagnosed with IgAN and have any questions or concerns about your illness don’t hesitate to speak to your kidney specialist or your nurse specialist at your kidney unit.
You can also find further information, advice and helpful tips in our Just diagnosed and How can I help myself? sections.
There is an annual UK IgAN Patient Information Day where patients and carers meet and discuss their experience of living with IgAN and are given up-to-date information on progress in research and clinical trials in IgAN.
- IgAN patient information on the RaDaR website
- Join the UK IgAN Patient Support Group on Facebook.
The need for more research
There are many unanswered questions in IgAN including:
- How does IgA deposit in the kidney and cause inflammation?
- What genes are important in the development of IgAN?
- Why does IgAN affect men more than women?
Extensive research, specifically the work being carried out by Professor Jonathan Barratt and Dr Fred Tam, is being carried out to answer these questions in a number of laboratories across the UK. Studies hope to find new and better ways to diagnose and treat the disease.
Patient stories
"Knowing that people like Dr Fred Tam are on the case, looking for a cure, gives me hope."
Dale Robinson
IgAN patient support group
The group formed in 2014 as an informal support and information network. The group shares information about events, research and possible treatments for IgAN.
Patient information days
A IgAN patient day is held annually. The aim of the day is to learn more about the condition, share experiences and find out about the research into IgA nephropathy. The 2018 patient day was held at Leicester University led by researcher Dr Karen Molyneux and Professor Jonathan Barratt. Read about the event or watch the video from the day.
Contact the group
Email [email protected] for further information about the group.
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