Research and Innovation at CMFT - Guy's Story
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
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
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
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.