Bearing Witness to the Ugly Reality of War

Highlight from the: EHDN Newsletter_Mar2023_Issue48

Yury Seliverstov, Neurologist and Researcher, Ulm University

For millions of people in Ukraine, 24 February 2022, marked a critical turning point. Overnight, life was redefined as that which took place before and after the start of war. Although some people may try to pretend that nothing has really changed and that life goes on, war affects everyone without exception — some directly and some indirectly, some at the start and some a little later. This is the ugly reality that we are currently bearing witness to.

While the inevitably serious long-term consequences of the war are yet to come, the HD community has already been impacted. When I worked as a movement disorder specialist in Moscow, I worked with people with HD not only from Russia but neighbouring countries, including Ukraine. I stayed in contact with many of these people and share here some of the insights I have gained into how the war is affecting their lives.

In Ukraine, while some people were evacuated, some were simply physically unable to leave and are now trying to somehow survive under fire and bombing.

Meanwhile, in Russia, many highly qualified doctors and researchers who do not support the war left the country – creating even more obstacles for the people with HD to receive adequate care. But also, many who disagree have been forced to stay, either because of problems with relatives or a lack of financial means to leave the country. This means they must now try to avoid potential persecution.

For the foreseeable future, access to participation in cutting-edge clinical trials is closed to the country. The long-awaited launch of Enroll-HD has also been suspended, and people with HD are now unable to participate as easily in the activities of our international HD community. Some people, perhaps out of misguided patriotism, may declare that the country does not really need all that anyway. But I believe that to declare such a thing in today’s world is not only foolish but denies the enormity of the destruction and suffering that is being inflicted. This ongoing and severe stress continues to place unprecedented pressure on people with HD and their carers and relatives. In September, some people identified as premanifest HD mutation carriers tried to hide in other countries to escape conscription, while others tried to prove to the so-called medical board at the conscription sites that they could not and did not want anything to do with the war. It is clear that the wounds that continue to be inflicted through this war will not heal for a long time, and unfortunately, it is hard to envisage a quick, humane and reasonable resolution to the unleashed conflict.