Health & Beauty

The Huntington Enigma

The battle against the spread of Covid-19 has not eclipsed the need to also focus on other diseases. Author Bruce Harris is working to raise awareness and funds for Huntington’s Disease

Covid-dominated 2020 has tended to push all other ailments into the shade, and many of the charities who are trying to contribute in other areas have struggled over the last year. Huntington’s Disease, which burst forcefully into the lives of my partner and I when he was diagnosed with it in 2016, remains a phenomenon about which little is known or fully appreciated by many people.

I am not a doctor and therefore not qualified to go into the more intricate medical details of the illness, but I am one of the many thousands of people of all ages and walks of life in this country and almost every other country in the world whose lives have been impacted by the illness. Like most people in trouble, it behoves us to keep some kind of flag flying in the hope that enough help will eventually be forthcoming.

There are several characteristics of Huntington’s Disease which make it a particularly cruel and pernicious invader of lives. Firstly, there is no cure, and as yet, no treatment, meaning patients have to endure an erosion of their mental and physical powers over the years without the assistance taken for granted in most other conditions. Secondly, it is a plague of the innocents; it does not come about because people haven’t been taking care of themselves or because they are indulging in some self-destructive practice like smoking or drug-taking. HD is entirely hereditary, thereby highlighting the third brutal aspect of it, parents inadvertently handing it to their offspring. Patients inherit the faulty gene from their parents, meaning mothers and fathers have to face the fact of handing their son or daughter a serious and ultimately fatal illness.

But perhaps the unkindest cut of all is that HD is indiscriminate in terms of age; it is not an ‘old people’s illness’ and it can be contracted at any age. It is also generally the case that the younger the patient is, the more vicious and life-changing the illness is likely to be.

The future is not devoid of hope; valuable research is being done into methods of ‘gene silencing’, aimed at changing the behaviour of the faulty gene so as to stop it doing the damage it does. University College London is the leading centre in this country: https:// www.ucl.ac.uk/ion/research/centres/hd-centre

Having come to writing relatively late in life, I have at least one way of striving to help this cause, and after three books in aid of the Huntington’s Disease Association, www.hda.org.uk, I’m now attempting one in aid of the Huntington’s Disease Youth Organisation, en.hdyo.org—see above concerning the consequences of contracting HD at an early age.

The book, Fallen Eagles, consists of coming of age stories where young people face the dilemmas arising in their lives, and it has a Foreword by Catherine Martin, Chief Executive of the HDYO. 2021 is hopefully going to be memorable for the suppression of at least one world-wide and persistent illness. It could also be a great and glorious year in the lives of countless thousands of HD patients and carers if it brings about the last and decisive research push which will consign HD to the footnotes of history.

Fallen Eagles, raising funds to help those suffering from Huntinton’s Disease is available at retail outlets as well as via www.bruceleonardharris.com