Schoolgirl is the first in the UK to benefit from a pioneering kidney treatment
Posted on Thursday 3rd January 2019
Kitty Skrabski's life has been transformed by her treatment
An innovative treatment provided by Evelina London has cured a girl with a rare kidney disorder.
Kitty Skrabski, 10, from Hertfordshire, was diagnosed with a serious kidney disorder called nephrotic syndrome in 2014. The condition affects 1 in 100,000 children and young people every year.
Due to the condition, Kitty needed a transplant. Her father, Chris, donated one of his kidneys to her, but soon after the operation, the nephrotic syndrome recurred and affected her new kidney. She underwent a number of initial treatments, but these were unsuccessful and her kidney started to fail.
After being referred to our nephrology team, Kitty received an innovative treatment called LDL apheresis, which cured her nephrotic syndrome and saved her donated kidney. This made Kitty the first child in UK – and the first in Europe – with nephrotic syndrome to be successfully treated with LDL apheresis after a transplant. The chance of disease returning after a transplant for patients with Kitty’s condition is around 60%, so her progress will give hope to others.
The treatment is carried out using a machine called the Liposorber System, which was originally designed to remove cholesterol and other fatty substances from blood, using a special filter. In nephrotic syndrome, the machine is thought to remove a molecule in blood that is attacking the kidney.
Kitty’s mum, Debbie, said: “Being told that Kitty’s nephrotic syndrome had come back after the transplant was a devastating blow. Without effective treatment to cure her nephrotic syndrome she faced a very uncertain future.”
After hearing about LDL apheresis being used in America to treat children with Kitty’s condition, Debbie contacted Dr Ania Koziell at Evelina London. Our hospital is currently the only UK centre to offer LDL apheresis to children with nephrotic syndrome after a kidney transplant.
Debbie explained: “Once Kitty’s care was transferred to Evelina London, Dr Koziell and her team worked tirelessly to have an apheresis machine sent from Germany and arranged for a nurse to be trained on how to use it. It was a huge relief to know that Kitty would finally get treatment she needed.”
Kitty started treatment in September 2017. She used the LDL apheresis machine for two to four hours each week for 13 weeks. By December 2017, tests showed treatment had reversed reoccurrence of her nephrotic syndrome, and that her donated kidney was no longer being damaged.
Debbie said: “Throughout treatment, Dr Koziell and her team were amazing – she used her vast experience and knowledge to adjust Kitty’s medications, and explained what was happening and what to look out for at every step. We were ecstatic when we were told that Kitty’s nephrotic syndrome had been successfully treated and she was no longer in danger of losing her kidney. After all we had been through it felt like we had witnessed a miracle.
“Kitty’s life has been transformed by treatment. She is now back at school full time for the first time in four years, and she has got back into doing things she couldn’t do when she was ill, such as karate, swimming and horse riding. I’m so grateful to the doctors and nurses at Evelina London who treated Kitty. They saved her kidney and ultimately her life. I can’t thank them enough.”
Dr Koziell, a consultant nephrologist at our hospital, said: “We are very pleased that Kitty has now made a full recovery and is doing really well. Disease reoccurrence following a kidney transplant is sadly all too common with the type of nephrotic syndrome Kitty had. It’s very difficult to treat and as such is the second highest cause of kidney transplant loss after rejection. Another transplant is not a solution as there is also a very high risk of recurrence in subsequent transplants.
“LDL apheresis has been around for a while as a treatment for people with very high cholesterol, but its use for nephrotic syndrome is relatively new. It was discovered entirely by chance that patients with elevated cholesterol who also had nephrotic syndrome unexpectedly experienced resolution of their symptoms when they had treatment. It’s thought that the Liposorber removes an inflammatory molecule from the blood that is causing the attack on the kidney.
“We only know of a few cases in the world, mainly in the USA and also Japan, where it has been tried in children post-transplant. Without the success of our approach to combatting disease recurrence, Kitty would have eventually lost the donated kidney, and her life would have been at great risk. Our ability to use LDL apheresis in this very novel way is a testament to the dedication, expertise and brilliance of our staff.”