Our medical history

I’ve had my last chemo for a few weeks as I am due to have a PET scan to see if I am in remission yet. If I am, then the real journey can begin. However, as usual the steroids made me very hungry and hyperactive and now I’m experiencing the downside of withdrawal.

I did see an interesting programme on television a few days ago about twins which made me understand the significance of genetics and epigenetics a little more. I can see that genetics have a major influence on our health but even they are affected by what happens in the womb and our lifestyle.

To be honest, the real problems of the donor-conceived are about identity, culture, genealogy and even ethnicity but nobody is very sympathetic about that so at the moment I am concentrating on the very practical area of our medical genetics and the fact that we don’t know about our history.

I’m not just thinking about Huntingdon’s disease, haemophilia or muscular dystrophy where you might have to consider the risks of marriage and children quite carefully. But it’s also about prevention. For example, I have always known that there is a lot of arthritis in my mother’s family and I have taken care to adopt a diet which seems to keep me relatively free of its effects.

Of course some diseases can strike out of the blue. Not all cancer or heart disease is genetic. However, I have a friend whose sister suffered a heart attack so he went for a check-up himself and found he had some serious problems which, fortunately, have been put right. It’s not about living in fear, but if we know that some members of our family have had problems we can organise check-ups or perhaps keep off the Pill or HRT. It is quite difficult when you discover that cancer/lymphoma is at stage 4. On the other hand, if you know that genetically your family history is good, you can concentrate on living a healthy lifestyle without worrying that an unknown genetic factor will affect you.

That’s all we ask. Is it so difficult? Must this information be a secret? Yes I know there are lots of people who know very little about their medical history and that is both sad and difficult, but we are the only group where a commercial contract has existed between the medical profession and our parents/donors to deliberately deprive us of this knowledge.