Manchester event for patients with Nephrotic Syndrome and their families

Patients with Nephrotic Syndrome (NS), their families and medical staff got together at The Nowgen Centre at Central Manchester University Hospitals NHS Foundation Trust this week to learn more about the condition.

The Nephrotic Syndrome Patient Information Day, which took place on Wednesday 16 March, was an opportunity to share experiences of living with and treating the condition, and information about the latest research being undertaken to improve outcomes for children with NS. The event featured guest speakers including CMFT consultants and NS patients.

It was organised by The Nephrotic Syndrome Trust (NeST), a charity that funds research into NS, set up in 2005 by trustee David Yearsley whose son James suffers from the condition. The event was funded by the British Kidney Patient Association (BKPA) and Kidney Research UK (KRUK).

Nephrotic Syndrome mostly affects children but it can go on to develop in teens and adults too- it affects around 10,000 people in the UK every year.

For people who have Nephrotic Syndrome, the filters in one or both of their kidneys are ‘leaky’ which results in the transfer of protein from their blood to urine. Normally, urine doesn’t contain any protein but people with NS develop Ôproteinuria’ which means there is protein in your urine.

The body knows that there is something wrong so it reacts by retaining water which may lead to other issues including developing infections, thrombosis or anaemia and having low levels of vitamin D. If left untreated, Nephrotic Syndrome can develop into kidney failure meaning sufferers may need a kidney transplant.

Honorary Professor of Paediatric Nephrology at the University of Manchester and Consultant Paediatric Nephrologist at Royal Manchester Children’s Hospital (RMCH), Nick Webb; Wellcome Trust Intermediate Clinical Fellow at the University of Manchester and Honorary Consultant in Paediatric Nephrology at the RMCH, Dr Rachel Lennon and Professor Moin Saleem from the University of Bristol and University Hospitals Bristol NHS Foundation Trust spoke at the event about research into NS.

Other speakers included: Clinical Research Fellow at the University of Liverpool, Dr James McCaffrey; Consultant Nephrologist at Manchester Royal Infirmary’s Department of Renal Medicine, Dr Durga Kanigicherla; NeST fundraising coordinator, Wendy Cook; representatives from the Greater Manchester NeST Support Group; Nicholas Palmer from BKPA and mother, Jennie Langley who spoke about NS from a parent’s perspective.

Professor Nick Webb said:

We were delighted to host the NS patient day at Royal Manchester Children’s Hospital. There is so much going on here around research into NS so it was great to be able to meet with patients to share insights and potential research studies with them.

“It was also an important opportunity for patients and parents to learn more about NS and network to meet other families in a similar situation, so that they do not feel alone or isolated living with the condition themselves or caring for a child who has it.”

Wendy Cook added:

So far we have held three successful Nephrotic Syndrome Patient Information days around the UK in Bristol, London and Birmingham.  These patient’s days are invaluable to patients and families to understanding this rare and serious debilitating kidney condition and many of these sufferers are children. My own son, who is 20-years old, has reoccurrence of NS in transplant, hence my involvement in NeST.

“Enduring a rollercoaster of treatments and relapses has a devastating effect not only the person suffering from NS, but their whole family too. Many of those suffering with NS hardly come in contact with others suffering from same condition, so they are left feeling very isolated coping with it all. Having these patient days means having others to share experiences of coping with NS and some patients and parents have built up long lasting friendships through meeting up at these events too. They are also an opportunity for people to gain greater understanding and knowledge of NS; how to cope with it; treatments, and to hear the latest research which is being undertaken by medical teams across the UK, including in Manchester and Bristol.”