Our research: Susan’s lupus story
Susan has Systemic Lupus Erythematosus
(lupus), an autoimmune disease where the body mistakenly attacks
health tissue. It can affect the skin, joints, kidneys, brain, and
other organs. Susan has been a patient at Manchester Royal
Infirmary for almost 20 years and has taken part in a number of
different research studies.
I had an inkling something was wrong in my late teens when I
started to have problems with my health, including joint pain.
After three years of tests I got an official diagnosis from my
doctor, who told me I had lupus. I had never heard of the disease
and did not understand what it meant or how it would impact my
Over the next 10 years I was able to control the disease
somewhat with a mixture of immunosuppressant drugs and
When I was diagnosed I had initially been told it would be
difficult to have children, but I was blessed to give birth to two
healthy boys who are now 17 and 18 years old. Unfortunately through
my second pregnancy I experienced a serious flare up of my lupus
and this continued on and off for years to come. I would spend days
without being able to get out of bed; my body was gripped with pain
and stiffness leading to a number of complications such as
cellulitis, arthritis and Raynaud's disease. This had a major
effect on my family, work and social life.
It was around 2004 when the immunosupressants stopped working
and my consultant tried me on various other drugs, which worked to
varying degrees. I was then lucky enough to be one of the first
patients to be put on rituximab, a new biologic treatment, which
has transformed my life. The effectiveness of the treatment has
meant I have been able to go back to working full time, managing my
own business, as well as enjoying getting out more on long dog
walks and seeing friends and family.
I first found out about research through my being a member of
Lupus UK and through conversations with my consultant, who is
passionate about advancing medicine. I know that without research,
drugs such as rituximab wouldn't be available so I was eager to get
involved. My reason for taking part in research is not only to help
my condition but help future lupus patients going forward.
I have taken part in various studies, with the most recent one
involving an MRI scan. The study is looking at how the brain works
in people with lupus, focusing on memory and concentration
problems. What I've come to learn through my experience of
research, is that it isn't all about discovering new drugs and
treatments. Scientists and doctors are working together to develop
a better understanding of the disease, how it can be treated,
managed and most of all how it affects people lives.
Research helps create a positive environment for patients,
encouraging us to look into the future and look at how we can
overcome obstacles such as disease management and psychological
side effects. I believe in having a positive attitude towards life,
even if there are hurdles along the way. Above all I am determined
that my condition is never going to get me down and with the help
of medical developments, I won't let it win!
Learn more about our research
Hear more on our research into Lupus looking specifically
at memory and concentration problems from researcher Michelle