60 Secondi con…

La BCM è una malattia molto rara e per questo molti pazienti hanno passato gran parte della loro vita senza avere una diagnosi certa, spesso soli, senza contatti con persone nella loro stessa condizione.

Grazie all’avvento dei test genetici, dei social media e di internet e grazie al supporto della BCMFF, siamo ora in grado di far entrare in contatto tra loro pazienti di tutte le età, che possono ispirararsi ai successi ed imparare dalle esperienze degli altri.
Trudi Dawson, madre di un bambino affetto da BCM e residente nel Regno Unito, presenta la rubrica “60 Secondi con…” che ha l’obiettivo di connettere le famiglie e condividere le esperienze di coloro che convivono con la BCM.

Mentre attendiamo che una terapia sia disponibile, possiamo lavorare per creare una rete di supporto per noi e le nostre famiglie.

David

I am retired as the owner of an HVAC business which I sold in 2015. I like to read, go to movies and work in the garden. My wife and I travelled to Europe in late summer.

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Dean

I am retired now but worked as a materials engineer specializing in electronics packaging for 35 years. I worked for Tektronix, Intel, and QORVO. Most of my career has been working on cell phone power amplifiers…

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Oscar

My great-great Grandfather was described as ‘not being able to see colour and not being able to see very well’, so we assume he also had BCM. I have a brother (and a sister) who does not have BCM, uncles, cousins, none of whom has BCM. I am very special in my family.

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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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