ABOUT US
The Structure of Beat Kidney Stones

Beat Kidney Stones is a Charitable Incorporated Organisation and was entered on the Register of Charities by the Charity Commission on the 12th December 2016 and was given the Registered Charity Number 1170678.

This Charity initially intended to record information to help kidney stone Sufferers and their families. Very quickly the Charity realised that very few people knew and understood what all sufferers have to experience. Consequently the Charity now tries to be an informations source and signpost for all. 
Facts

From the web site of the London Urology Associates who have published over 300 research papers in scientific journals and are actively involved in clinical research and teaching write, "Some people also appear to have a tendency towards stone formation for different reasons. Once you have formed a stone, there is an increased risk of you forming more stones. 

The prevalence of the disease is between 2% and 3% of the population and it is estimated that the likelihood of a Caucasian developing a stone by the age of 70 is approximately 1 in 8. Acute renal colic (pain) is common and often a recurring condition with an annual incidence of 1 - 2 cases per 1000 and a lifetime risk of 10% to 20% for men and 3% to 5% for women.

Approximately 25% of people with kidney stones have a family history of kidney stones.
Men suffer more stones than females (3 to 1). The peak incidence is between 20 and 40 years of age.
Geography: the prevalence being the highest when living in mountainous regions, deserts and tropical areas.
Climatic: stone formation is the highest during summer months.
Diet: certain foods that are absolutely necessary also increase the likelihood of stones."  

Facts

From the web site of The British Association of Urological Surgeons Ltd who write, "Kidney stones are found in 2%-3% of people and 0.5% of people present each year with an acute episode of pain due to stones; these rates have been rising steadily since the start of the 20th century.

Men are more commonly affected than women. After the age of 50 then the sex distribution becomes equal;
At the age of 70, you have a lifetime risk of 1 in 8 for forming a stone;
Stones are responsible for more than 12000 hospital admissions each year;
Stone formation is governed by both intrinsic (heredity, age and sex) and extrinsic factors (geography, climate, water intake and diet);
Poor fluid intake combined with low-roughage, high protein diet containing a lot of refined sugar increases the risk of stones.
There is an association with the "metabolic syndrome" (Syndrome X)
Recurrence rates for stones are high (20% at 5 years, 35% at 10 years and 70% at 20 years)
 
Potential Areas of Research

Why do only some people have a kidney stone?
Why do more men than women have a kidney stone?
Why do some people have more than one stone?
Is it possible to identify why different generations of the same family have kidney stones?  

Is it possible to be given drugs to reduce the size of kidney stones?
Is it possible to be given drugs that would dissolve a kidney stone?
To alleviate  side effects and the consequences of existing treatments?
Would it help to know the levels of anti-biotic and pain control drugs taken by kidney stone sufferers?

Drinking water helps, could it be possible to achieve more by adjusting our diet?
Does diet cause a kidney stone to form or does diet influence the growth of a kidney stone?

The Charity appreciates the solution to some of these questions will be complicated and arrived at via a number of pieces of research. So please do not be daunted by the size of the questions.
 
Would the following help future Researchers
 
How about starting a food intake diary? It will be easy to start and probably very difficult to maintain over a long period. To pass one stone is bad enough but to pass a second is really one too many! The following basic information may help a Researcher in the future: 

Date of birth 
Male/Female 
Area of the country. For example the post code for Beat Kidney Stones is EX34 0HJ. Please record the part of your post code that is equivalent to EX34.

On a daily basis please record the following: 

Date; 
Time for each meal - content and quantities and how cooked; 
quantity and types of liquids drunk. 

Please be honest because a food or drink perceived to be bad for us but very nice to consume may turn out to help reduce the likelihood of further kidney stones; and vice versa. 

Diary for Drinking Water and other Beverages 

Please tell Peter@beatkidneystones.co.uk the amounts of liquids drunk so that he can include them in a table for publication in the Linkedin Group, Beat Kidney Stones. Again please be honest so that true figures can be accumulated.  

 If any sufferer or Researcher wishes to offer further comment then please do so?
 

For Researchers


If you think Beat Kidney Stones will be interested in providing monies for funding your research, be it top up funding or new research then in the first instance email Peter@beatkidneystones.co.uk with your reasons.

Please include contact details, who will be involved, the identified problem and details of the public benefits.

All requests will be confidential and not communicated to anyone other than people representing the Charity Beat Kidney Stones. 

Research Choices

Beat Kidney Stones would like to know from Sufferers or family members of Sufferers, which of the following 5 recommendations made in the NICE Guideline which was published on the 8-1-19, https://www.nice.org.uk/guidance/ng118 ; would they wish the Charity to support? This will always be an open question.

Early in 2021 the following priority was established by Beat Kidney Stones from sufferers opinions:

1 Non-steroidal anti-inflammatory drugs – route of admission
What is the most clinical and cost effective route of administration for non-steroidal anti-inflammatory drugs in the management of acute pain thought to be due to renal or ureteric stones? 

2 Alpha blockers and ureteroscopy
What is the clinical and cost effectiveness of tamsulosin as an adjunct to ureteroscopy?

3 Metabolic assessment
What is the clinical and cost effectiveness of full metabolic as compared with standard advice alone, in people with recurrent calcium oxalate stones?

4 Preventative treatment following shockwave lithotripsy
What is the clinical and cost effectiveness of empirical potassium citrate or bendroflumethiazide as preventative treatment for people with small residual fragments following shockwave lithotripsy?

5 Frequency of follow up imaging
What is the clinical and cost effectiveness of 6-monthly imaging for 3 years for people with recurrent calcium renal or ureteric stones?

Actual Research posted on the 27th February 2021



For all sufferers of kidney stones who are worried about the quantities of antibiotics they have to take to counter kidney damage etc. The good news is a team at U.C.L. are working on an algorithm to improve antibiotic prescribing practices in hospitals.

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OUR INSPIRATION 

Our inspiration for creating this charity was Margaret who passed 47 stones over 29 years.

Every kidney stone meant excruciating pain, potential bladder and kidney infections and possible kidney damage and failure. Kidney stone pain is ranked as one of the top 3 pains to endure along with a heart attack and a gall stone. Some kidney stones were so painful for Margaret to pass that losing consciousness happened regularly.

Imagine the number of x rays that were taken of Margaret to establish the cause and site of the pain? 
Imagine the numbers of anti-biotic pills that were taken by Margaret to cure infections like cystitis and to protect her kidneys?
Imagine having a full bladder, desperate to urinate but not able too because a stone is blocking the flow?  

The final indignity was that Margaret was diagnosed with terminal cancer and during her last 7 weeks here she had to pass a kidney stone - not even in her last few weeks was she spared the additional pain of passing a kidney stone.

Margaret listened to medical advice and tried to research as much as she could to try and reduce the frequency of kidney stones: she took regular exercise and drank copious amounts of water but she struggled to find the help and support she needed and that's why we wanted to create this charity - so that no one else will have to suffer like her.
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