Hi I'm Ashleigh Taylor. I am 13 years old and I have a rare condition called nephrotic syndrome. I was diagnosed when I was only 13 months old and it progressed from there. I wasn't unwell very often and I was well and healthy for a long time. I was just swollen a lot of the time.
Last year I started to feel very nauseous and tired, and Leicester Royal Infirmary transferred me to the QMC hospital in Nottingham. They told me it was time to get rid of my kidneys and start dialysis.... I was so scared and unfortunately, I started to have panic attacks, I got admitted to the ward to try and help me calm down. Then a few days later we got a date for the surgery.
I will always remember the 28th of September, which was the day I got my kidneys removed. After that operation, I felt amazing. I stopped eating for a while, so I had to have an NG tube placed. This is all getting me ready for the best thing, a new kidney!!
Dialysis rocks because you can watch your favourite movies and have your friends for sleepovers. But there are some downsides; you can't drink a lot, and the diets are very strict, but you just carry on being positive and you always succeed!!!
Focal Segmental Glomerulosclerosis (FSGS) is a form of kidney disease. It is a type of Glomerulonephritis, a disease in which scarring occurs inside some of the glomeruli (the tiny filters of the kidneys). This scarring means the glomeruli are no longer able to filter blood adequately. This scarring is permanent and cannot be reversed.
There is no one cause of FSGS. Some of the causes can be anything from infection to a blood disorder. It can even be caused by some drugs. In Ashleigh’s case, it is caused by a genetic mutation on the podocin mutation gene.
There are several medications which can be prescribed to help patients with FSGF. These range from corticosteroids, immunosuppressive drugs, diuretics, and blood pressure medication. Patients with FSGS will also need to undergo dietary changes.
As FSGS is a chronic disease and damage to the kidneys cannot be reversed, many patients go on to chronic kidney failure. This often means that patient needs a kidney transplant and dialysis in order to survive.
Ashleigh underwent surgery on the 28th of September 2016, to remove both of her kidneys. She currently receives dialysis for 12 hours per day at home while she awaits a viable transplant.
For all the information on donation and how you can help people like Ashleigh, visit the Organ Donation website by hitting the button below.