It was around twenty years ago when Guy Hill was diagnosed with IgA Nephropathy (IGAN) a form of inflammation in the kidney disease, at the age of 35 years old. In this disorder IgA, an antibody produced to fight infection and circulates in our blood, lodges in the kidney and results in inflammation which can go on to affect the kidney’s ability to filter blood.
Below Guy discusses why he believes more patients need to take part in research studies.
When I was in my mid-thirties I began to suffer from severe headaches that had no obvious trigger. After a number of visits to my GP I was referred to my local hospital for a biopsy which confirmed my diagnosis of IgA nephropathy.
When my doctor took me through my results, he explained that 20% of those with the disorder go on to renal failure but, and what shocked me the most, was that there was no cure.
Back in 1996, it was the early days of search engines on the internet, and my searches for IGAN kept bringing up results for International Grocer’s Association! However my quest for information continued and what kept coming to light through websites, publications and articles I found was about the lack of progress in IGAN research due to small patient groups or not enough funding.
Some years later when I heard about a clinical study for IGAN at the Manchester Royal Infirmary and I instantly asked to be referred on to it. When I was being consented on to the study I was warned there may be side effects of the treatment being studied, due to the progression of my IGAN. However I was keen to try any new treatments possible so went ahead on the study. Unfortunately these concerns were right and I ended up coming off the study medication due to a reaction.
Many people may think this would have turned me against clinical research, but would I take part in a study again? Yes, without a doubt.
IGAN is a chronic disease, i.e. for life, and I’ve had to undergo dialysis and a kidney transplant because of the disease. Public awareness of kidney disease is so important to ensure people get an early diagnosis and research can contribute to this process. Without the involvement of IGAN patients in research we cannot move forward in our search for new treatments and a potential cure forward. This means it is vital for patients as well as medical staff to play a role in research.
There are so many steps and processes completed before a study gets to a clinical study, which can take many years. Therefore we, as patients, must embrace the chance to be part of a study that could provide data to bring a new treatment to the NHS.
In the past 20 years since my diagnosis I’m happy to say research in this area is improving and there are now more studies looking into new treatments for IGAN, but there is still a lot more that can be done. Technology now allows researchers to work collaboratively across different geographical patient groups to study larger amounts of data on the disease. Genomics has also come on leaps and bounds and gives us the chance for optimism to identify genetic factors which influence diseases like mine.
Taking part in research has broaden my kidney knowledge beyond my immediate clinical needs and made me a more independent patient. It is ‘my way ‘ of giving something back and I am proud to say that I am an advocate of research.