60 Seconds with…

BCM is a very rare disease and many men have spent a large proportion of their lives living with no diagnosis or alone with no contact with others in the same situation.

Thanks to the advent of genetic testing, social media/the internet and with the support of BCMFF, we are now able to connect BCM men with each other and their families. Being inspired by our successes and learning from our collective journeys.

Trudi Dawson, the mother of a BCM boy in the UK, presents our ’60 seconds with….’ column with the aim of connecting families and their wealth of experiences living with BCM. Whilst we await a cure, let’s work to support and guide each other and our BCM family.

George

I grew up at a time when there was not much information about BCM, so I would suggest educating yourself about BCM. On a personal note, I would encourage parents to test the limits of what their children can do – be protective, but not over-protective. You will be shocked at how functional your child can be if you let them explore their interests.

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Virgil

I was a Machinist. I would have liked to have been a Cowboy and Rancher all my life…

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Jason

I don’t like doing things that remind me that I can’t see as well as others.  Not much for spending time outside. I like NASCAR and watching movies.
Don’t be afraid to inform others about what lighting conditions are ideal for you to see or participate in an activity.  Most people are very willing to accommodate you.
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Bob

After a lifetime with BCM, here are a number of tips from various times of life:

As a young person, stand up to bullies, but don’t let anger guide your response to ignorant people. Always study and work hard – if you are well-respected and liked, many wonderful people will set up to mentor you and help you overcome educational and occupational obstacles related to BCM.
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