Nephrotic Syndrome Trust (NeST)
Please kindly consider jumping for our charity because Nephrotic Syndrome is a serious debilitating kidney condition that affects around 10,000 people in the UK each year, many are young children. If you’ve got Nephrotic Syndrome the filters in your kidneys are ‘leaky’ which results in the transfer of protein from your blood to your urine. This can lead to infection, thrombosis, low levels of vitamin D, and anaemia. First signs and symptoms are puffiness around the eyes, oedema around the ankles and abdomen and frothy urine. For some people sadly they will go into kidney failure and need a kidney transplant. Transplants are often successful, but tragically over 50% will have re-occurrence of NS in new kidney. It’s important to support us as we are a small charity which receives no government funding and totally reliant on the public to help support vital research which takes place at Bristol University laboratories to find a cure. Please help us! Thank you!
Nephrotic Syndrome Trust (NeST) was launched by our founder David Yearsley in 2005 after his son was diagnosed with the condition with the help of Jonah Lomu the international rugby star player who himself was a sufferer, but now sadly passed away. Shortly afterwards Wendy Cook came on board to help lead charity after her son was transplanted at Bristol children’s Hospital and had reoccurrence of Nephrotic Syndrome in new kidney. Since then the charity has grown, but we are still relatively small, but there have been many wonderful people fundraising to keep the vital research work going led by Professor Moin Saleem and team.
Nephrotic Syndrome patients currently receive a mish mash of toxic medication which sometimes works, or for a limited only, or not all whilst experiencing very distressing side effects both short and long term. Many patients are exasperated and exhausted through taking huge amounts of medication which simply does not work, or at the very least just manages the condition. The horrendous side effects have meant many patients being admitted into hospital, which of course impacts greatly on their quality of life and their immediate family.
Our charity aims are to – raise awareness of the condition, fund research to find a cure and provide a hub of knowledge and support for NS sufferers and their carers.
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