For as long as I can remember I have never missed watching the Great North Run that is held in Newcastle every year in September.
I’m not sure whether it was the combination of the spectacular red arrows display or the sheer amount of people running across the iconic Tyne Bridge that amazed me the most. I used to dream of running it one day myself; never in a million years did I think I would get the opportunity to do so. This year I made the decision to make that dream come true. Alongside my brother, I managed to complete the half marathon in one piece, partly sweaty and out of breath but mostly feeling positively overwhelmed because we were
running for Kidney Research UK.
I come from a family who suffer from Alports Syndrome
This amazing charity is dedicated to finding better treatments and trying to cure kidney diseases. I come from a family who suffer from Alports Syndrome (AS), a genetic, chronic kidney disease which has badly affected mainly females in my family as opposed to normally affecting men. My eldest sister and more recently in the last two years, two cousins have had kidney transplants, all which have been successful, but not without going through some form of dialysis prior to getting a kidney.
My late mother, who was on dialysis up until the day she died, also had a transplant and I know one day I may need one as well. My family were exceptionally supportive and thought I was mad as I had never run before. They helped my brother and I raise around £3000 between us, by posting our JustGiving fundraising pages on Facebook and pictures on Instagram; tweeting and retweeting on twitter; to posting on LinkedIn where I received many donations from kind generous people from around the globe. On the day of the run, lots of family members came to the finish line to cheer us on, with a smile of pride.
I believe more awareness is needed about this disease
I was never really aware of what AS was and how it worked. It was assumed my mother had AS but there wasn’t much research being done on it back in the 90’s so we never really knew anything in detail. This is why I decided to run for a kidney research charity, specifically to raise funds for research into AS. I also believe more awareness is needed about this disease and there is much research needed into this particular area to help understand its manifestations and to try and find a cure for it as it could help future generations in my family and others too.
A positive and informative experience
Another reason for raising my own and my family’s awareness of AS, was recently participating in a kidney research study at the Royal Free Hospital, which has been quite a positive and informative experience. From knowing very little about AS, I now have a sound awareness of the disease. Speaking to the research nurses
and doctors involved in the study has helped me and my family understand a bit more about the disease we have and how to live with it on a daily basis. To begin with I was quite apprehensive about taking part, as again, I had never actively participated in any kind of kidney related research, observational study or even general health related research before.
In addition I was currently living in Istanbul, Turkey, so I wasn’t sure how long I was going to last when I was told the study was 2-3 years long.
I had been lugging around samples across the country!
Naturally, I was concerned about my involvement and what it entailed. The information pack was very detailed and helped alleviate some of my concerns practically, alongside the people involved in running the study, who spent a lot of time answering my questions and queries.
Another challenge was that, when returning to the Royal Free hospital every so often, armed with samples I had been lugging around across the country on trains and buses and relying on my siblings to safely store containers for me in their homes, I would panic in case I left or lost them anywhere.
These two or so years have flown by quickly and when I was told the study was coming to an end, I felt a mixture of emotions; mainly happy and glad I didn’t have to worry about losing samples or having nurses and many phlebotomists poking my thin and disappearing veins for blood samples despite having got used to it.
Taking part in a study specifically looking into AS has been worthwhile
My motivation for taking part in the Royal Free research study was to find out why this disease is common especially in my family, why some of my family members are greatly affected by it and others are not. In addition learning more how to live with it has also been beneficial. Since losing my mother in 1998 who had suffered from some form of AS and a failed kidney transplant, taking part in a study specifically looking into this has been worthwhile and certainly eye opening. I feel like I have made a small contribution which I hope will go a long way in kidney research.
There are many different types of kidney research studies running at the Royal Free. If you are interested and would like to take part in research, please let your kidney team know.
Alport Syndrome is a genetic condition characterized by kidney disease, hearing loss, and eye abnormalities. People with Alport syndrome experience progressive loss of kidney function. Almost all affected individuals have blood in their urine (hematuria), which indicates abnormal functioning of the kidneys.
By Saira Bhatti – Royal Free patient and research participant
