Genome Project Launch

Peter Grainger

St. Mark’s Hospital


When you are well, the last thing you have on your mind is your health. We all take feeling normal for granted. When we feel right, all is fine. When we feel fit, the world is rosy.

A graze, a bump, or a few stitches is nothing to worry about, but when we are unable to do things we take for granted, or when we have symptoms we cannot explain, that will not go away or that keep getting worse, it can be a time for worry.

If you have never had cause to be concerned about your health, imagine having symptoms that strongly suggest something is wrong. Imagine those symptoms are inside you and you cannot see what is occurring within. Imagine these symptoms persisting for days. Suppose you go to a general practitioner and they tell you nothing is wrong. Rather that it is indigestion, a headache, or back pain. These vague diagnoses do not explain these situations and leave patients concerned. How many unsatisfied inflammatory bowel disease patients are there out there?  How many patients with irritable bowel syndrome, or who have endured chronic constipation for years?

A doctor works in the same way a detective has to work: both have to get to the root of the problem quickly.  When a crime has been committed, the perpetrator has to be found.  When you have reason to be worried about your health, the first thing you want is a prompt and correct diagnosis. The human body is complex. In 2016 we do not know how all of the brain works. Speak with the Alzheimer’s Society, or the Epilepsy, or Parkinson’s societies, they are all desperate for more research.

In 1989, I knew something was wrong. I was referred to a hospital. I had put up with blood in my stools every day for months until one day I could no longer ignore it. The hospital X-rayed me to within an inch of my life yet the consultant radiographer concluded: “Mr Grainger, I can find nothing the matter with you.”

The next day my phone rang and I was told the hospital was positive that I had a life-threatening disease called familial adenomatous polyposis (FAP).  My life was at immediate risk.  Prompt life-saving surgery was required. Please come and discuss the severity of the situation at the hospital tomorrow. I did.

I chose my colostomy bag and worried about staying alive, I was 32.

Then one of those life changing miracles happened. I got the opportunity to come to St Mark’s Hospital, Central London. I had never heard of them before. I met my surgeon, the magnificent, wonderful, Mr James Thompson.  He treated me like a son. He could see my world now scared me, I was not myself.

In minutes I knew what was wrong with me. I understood completely and had answers to every question. I remember Mr Thompson asking me if I was happy to proceed under his care; I am sure I kissed him. Spending time with Mr Thompson and his students was a privilege, a joy even moments before he cut me open like a fish.

Everyone at St Mark’s told me to live my life, I was not about to lose it. I understood the procedures required and that if I wanted, St Mark’s would look after me. The world was back to normal.

It would take Shakespeare to thank properly the team that cared for me: Mr Thompson, Mr Cohen, and Prof Clark to name a few. I had found my Sherlock Holmes, my James Bond, and my Miss Marple. These surgeons and their teams change lives. I was among knowledgeable, understanding, and caring professionals.

Science is ever evolving. Detectives are now assisted by forensic techniques. Perpetrators are caught by the evidence left at the scenes of their crimes. These are precise, irrefutable DNA matches linking people to their crimes.

My grandmother and my father, each of whom it is safe to assume had FAP, never knew anything about the condition. Only once their FAP had caused cancer did they know they were going to die. What was giving them cancer, these two wonderful people never knew. I was lucky. St Mark’s Hospital knew that if unmanaged, there was a 100% likelihood of colorectal cancer for all FAP patients. Colorectal cancer can kill.

Medical and genetic science has moved on. Some years ago I was informed that a blood test was now available to detect FAP, which was 90% accurate. I could be diagnosed from blood extracted from my finger. If I had children, they would have been at risk. Protection for future patients was being put into place and when I eventually had children, they were invited for blood tests at age 16.

New clinical approaches have been put in place to be able to provide the right treatment straight away, to the right patient. A drug is used to treat every patient suffering with the condition it was designed for.  But human bodies are complex, we all respond to drugs differently. We need a medicine that treats us individually, precisely, effectively, and safely. Imagine being able to detect a problem in a patient before the patient knows they have a problem.  Imagine giving that patient the drug, or the management that will work effectively on the diseased cells, not affecting the healthy cells.  That is what we are hearing about today.

My family’s experience with FAP is astonishing. In the space of 60 years my family has gone from seeing FAP kill every single person in their early 40s, to knowing my children would be at risk of FAP before they were born.

In the future, genetic diseases will find it much harder to stay under cover. These diseases are getting easier to predict and easier to follow. We know where to find them, we know how they behave and we are increasingly aware of what to do.

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