Geeks Vs Loneliness: the genetic lottery

A few words from Paul Childs about the worry of inheriting a genetic disease

Hello and welcome to Geeks versus Loneliness. This week we have the awesome Paul Childs talking about the very real fear many people have of inheriting a genetic illness, and some practical steps for anyone in a similar position.

One morning about ten years ago I got out of bed with a terrible headache. I remember the date because Quantum of Solace was just out at the cinema – an innocuous fact that will actually become more important further down the page. I had this throbbing pain in the side of my head. As I began to slowly wake up and get ready for work I realised the pain was not the only thing wrong. You know when someone takes a picture of you with the flash and it leaves a white blob in front of your eye which takes ages to go away? Well, I woke up with one of those. But I thought it was just from throwing open the curtains as I leapt (crawled) out of bed and the sunlight dazzled me.

But as I was sat waiting for my train, a good hour or so later, the white flash blob was still there and colours in that eye were washed out. On top of that, the headache wasn’t getting any better. By the time I got to work nothing had changed. I was actually getting really worried. Later that night I was due to see the new James Bond film at the cinema (see, I told you) and there was no way I was going to miss it. So I took a bunch of painkillers and settled down in the cinema for some 007. And it made me feel terrible. All that quick movement and jerky hand-cam-wishes-it-was-Bourne technique, not to mention one eye was visualising in colour and the other in near-monochrome, made my headache and eye worse. It was time for the doctor.

My GP didn’t even attempt a diagnosis and sent me immediately to the eye hospital in Liverpool. While preparing me for some tests, the eye doctor asked me a load of simple questions about my family medical history (any instances of heart trouble, cancer) to all of which I answered “No”. Until he got to the last ailment on his list – neurological disorders. So I told him that my dad suffers from Multiple Sclerosis and that his dad died from Motor Neurone Disease (also known as ALS).

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“Ah’ said the eye doctor, putting all his stuff down and picking up the phone.

“Er. That’s a tad worrying.” I thought. 

I was referred to the Neurology department at Fazakerley hospital and went through all manner of prods (Ow!) and pokes (Hehe, that tickles!), sight and peripheral vision tests, the classic knee-jerk hammer and eventually an MRI scan – which I promptly and snugly fell asleep in. Once the MRI results were in, I was told that there was a small irregularity in my brain (“Small?” said most people who have met me), nothing out of the ordinary – many people have them – but the fact that I had it AND this family history was what bothered him.

“But MS and MND aren’t hereditary,” I said. 

“I see you’ve been doing your homework, and you are indeed correct that they cannot be inherited. However, your body’s susceptibility or ability to combat neurological disorders CAN be. While this eye problem is definitely not neurological, and I’ll be sending you back to the eye hospital for a second opinion, I’d say that you have a 50-50 chance of developing MS in the next few years. If you feel uncharacteristically tired, achy or uncoordinated, you must go to your GP right away and tell them to check for MS.”

Turned out that the eye thing was caused by (the eye-squeamish may want to skip the rest of this paragraph) calcification in the eyeball, which happens naturally with ageing, and had burst a blood vessel. The pain and white blob were my body’s shock reaction to it. I was told it would be fine after a while and sent on my way, bumbling down corridors like Mr Magoo, reaching for any handhold I could as my pupils were still fully dilated from the eye drops. It took weeks for the flash-blob to go away, and months until I could see in colour again in my left eye.

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I was OK. And ten years later I still am. I’ve stopped telling my GP to check for MS when I go partly because I’ve hardly been ill since then and partly because tests always drew a blank. I’ve taken up long distance walking, my motor skills are still fine (I put my inability to play the guitar and PlayStation games well down to just being a bit rubbish at them). But that was a tense time so I’d like to impart a little advice to help anyone else going through a similar ordeal.

  • Be careful using the internet for advice. A Google diagnosis for even the simplest of symptoms can have you believing you have anything from a common cold to scrofula and everywhere in between.
  • See your doctor as soon as you think something is wrong. The sooner you get a diagnosis or the all clear, the sooner your mind will be put at ease.
  • Talk to friends and family – it’ll be so much less stressful, whatever the outcome, with your support network around you. At the time I didn’t tell my parents because I thought that last thing my dad would need was to worry that he’d passed something on to me. However, it was the complete opposite. When I eventually did tell him what was going on he had lots of advice which actually helped me cope with it.
  • If you are working, talk to your employer – I can’t guarantee they will be sympathetic. Mine were not at first – or should I say, my line manager was not, giving me a hard time over all the time off I needed for testing, refusing to let me wear the sunglasses in the office which the doctor advised me to use to take the edge off the blob. In the end I made a complaint against him and he was horrified when he realised his actions were borderline bullying and not just “getting Paul to pull his finger out”. That conversation was difficult but it smoothed things over and made the made my workplace much more bearable during the period.
  • Most medical conditions have one or more charities attached who offer moral support. Sometimes trained professionals, sometimes volunteers – but they’ll all have the ability to answer your questions (which they’ve probably heard several times before), direct you to the correct medical outlets or just listen, chat and generally offer moral support.

I realise that the last four bullet points are essentially the same thing, but I can’t emphasise the central point enough – if you are scared, uncertain of your future, lonely or just desperate to get it over with – talk to someone. It really does help. And if you’ve been afraid to tell those close to you for fear of worrying them, although I’d urge you to get that mindset out of your head, you are always welcome to comment here. We’re quite a friendly bunch.

Thanks, as always, for listening.