When I was young I was diagnosed with Beckers Muscular Dystrophy. I have already spoken about this in previous blogs here and here. Recently I have joined the Nottinghamshire branch of the Muscular Dystrophy Campaign.When I told them I was visiting Newcastle the lovely Sara Wilcox arranged for me to visit the Centre the day I arrived. After a couple of hours waiting around I visited the Biomedicine West Wing. I got into reception and me being me I completely forgot who I was supposed to be meeting. So there I was at reception, looking through past emails trying to find a name. Eventually I met up with Dr Steven Laval. The first thing we talked about was just exactly what the Centre For Life does. You can read more about the Centre For Life Science Village here. He told me a little about the history of the Centre. His department originally started out specifically researching Limb Girdle Muscular Dystrophy (LGMD). They have now spread their research into Duchenne Muscular Dystrophy too.
I was then told that all muscle biopsies (yes every single one) from the past 30 years are kept and still are there. This means that the muscle biopsy I had taken from me 23 years ago is still kept in that building. Crazy stuff.
He then gave me some info on the other Dr's/Professors who work there. He also told me how they are in contact with various other places around Europe (which obviously helps with research). We then started the "tour".
The first place we looked around was a research room where students were writing up some results I'm guessing. Although they clearly weren't working (the students, not the research). We then looked into a lab where they had been doing research into LGMD as the microscopes had the intials on them. Yet again there was no-one in there. Here's where it gets interesting. We then went into a small lab where heart cells of mice have been stored for research. We discussed how they were stored by a machine which used recycled air so the specimen wouldn't be tainted by bacteria. This also keeps the temperature constant. We then looked at some of the cells that had been stored. The first one had very little happening. The second one however, had what can only be described as small looking volcanoes. These would occasionally "erupt". What I was actually seeing was the heartbeat of the cell. Even though it was very small it was probably the highlight of the tour.
It was at this point I started to realise that most of the science stuff had gone way over my head. So I tried to make myself seem a bit more intelligent by talking about things like CK Levels.
He then proceeded to talk about a machine that is used to look at blood test and muscle biopsy results. Whilst this was happening we stopped at many posters, I cannot remember what was as the majority of what was said was specifically dedicated to DMD and LGMD so I got confused at times.
When we finally sat down I got chance to ask him some questions I had thought about. The first thing I asked about was Exon Skipping. Having BMD I thought that any research on DMD would be beneficial to me. Turns out thats not so as it would only result in people with DMD having a milder form of BMD. Whilst I am happy that this is a start, I was slightly disappointed that it would have no effect on me (I know that sounds selfish). There is a good explanation of what Exxon Skipping is/involves here.
I then asked him about how the Centre is funded. It is funded partly by the NHS, partly by the University of Newcastle and partly by the MDC (Muscular Dystrophy Campaign). What stuck with me was the fact that he said that the MDC was struggling to fund the Centre recently. This shows why it is important that we keep spreading the word about the Muscular Dystrophy Campaign. We must also raise awareness of all forms of MD.
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