My story

I was diagnosed with ADPKD (Autosomal Dominant Polycystic Kidney Disease)in 2002 which is the most commonly inherited kidney disorder. 

In the UK, it accounts for around 1 in 10 people on dialysis
and 1 in 8 with a kidney transplant. ADPKD affects between 1 in 400 and 1 in 1000 people worldwide - over 12 million. It occurs equally in both men and women, across all ethnic groups. 

ADPKD is caused by mutations in one or more genes causing them to function abnormally. Because ADPKD has a 'dominant' inheritance pattern, there is 1 in 2 chance that an affected parent will pass on ADPKD to each child born. 

My Dad, Stewart Thornton, also had ADPKD.

ADPKD is characterised by numerous fluid-filled cysts in the
kidneys and often the liver and pancreas. Over time, the cysts grow and multiply, replacing normal healthy tissue and causing the kidneys to lose their function. Kidneys can enlarge up to 4 times their regular size and weigh up to 100 times more.

In early stages, there may be no symptoms and sometimes the cysts may not be noticed until adulthood or through family screening. However, some children present early with symptoms which can be confused with another form of PKD called AR (or autosomal recessive) PKD.

Common symptoms will vary by individual and may include back or abdominal pain, recurrent urinary infections or blood in the urine, kidney stones and kidney failure.

Over two thirds of adults and one third of children with ADPKD will develop high blood pressure or hypertension. Early and effective treatment of hypertension is essential to minimise the risks of strokes or heart problems.

Around 1 in 12 people with ADPKD will develop small brain
aneurysms. These tend to occur in individuals with a family history of strokes.

Many people with ADPKD will also get PLD or polycystic liver
disease. Usually, the liver is not affected by the cysts but they can grow uncomfortably large and cause pain.

However, not everyone with ADPKD will develop kidney failure and some people may never have any problems or be unaware they have the condition.

ADPKD is at present incurable but treatments can help reduce the symptom burden and lower risk of complications. 

The challenge

In 2021, I will be taking part in the #walk1000miles challenge - which will involve me walking at least 2.73 miles every single day to ensure I can hit the 1k miles mark.

I started on the 1st January and will post regular updates on progress.

The Andy Cole Fund

I am supporting the Andy Cole fund for this challenge. Andy set up the Andy Cole Fund alongside Kidney Research UK to help people like him (and me!), who are living with kidney disease. The money raised goes towards vital research into transplants and the best ways to support patients mental health and wellbeing.