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Fresh Mud

A blog about living with FSH muscular dystrophy. Questions?

Post 17 of 46

Research and Professor Edwards

Friday 15th January, 2021

In 1987, I was approached by a Professor Edwards and asked if I’d be willing to join his research program which aimed to learn more about muscular dystrophy, particularly FSH, by way of testing patients diagnosed with the condition. (Remember, this was long before the internet or mobile phones so finding information was difficult, as was finding others in the same situation.) I agreed to join the program.

Most of the tests were pretty standard, checking our eyesight and hearing, and other things like monitoring heart rate whilst sleeping. Being young, my eyesight was pretty much perfect and my hearing way above average; I remember Professor Edwards commenting that my hearing result “messed up our findings and ruined the graph of results” as, apparently, a large percentage of the other volunteers had below average hearing. Oops.

One test that sticks in my memory quite vividly was a muscle biopsy; they took a small piece from the calf muscle in my right leg. On the day this was taking place, I noticed that a few of the other medical staff helping with the study seemed to be limping. I had a nurse who was sat with me explaining what was going to happen, and I mentioned the staff limping; she explained that Professor Edwards insisted that anyone working with him on the program had to be subject to the same tests that we were experiencing. So on that day, every nurse and doctor in the department had lost a small piece of calf muscle so that they “would understand how the patients felt and would empathise with them.” I found it pretty hilarious.

After the program ended, I didn’t hear anything else about it, but, years later, I mentioned it to a specialist I was seeing and she told me that it was well known “in medical circles.”