Huntington and Coronavirus (responsible for the COVID-19 syndrome)
by Ferdinando Squitieri
I would like to take stock of this terrible situation that we are all living for different fate and condition: the patients and their families on the one hand and us, health care workers engaged in the fight against this disease, on the other. Werther we are doctors, psychologists, biologists, nurses or administrators, there are not many changes: in English we would all be called "professionals" which is a short, clear and concise term. However, for once, not matter if we are patients or professionals, we all have a common denominator: vulnerability and fear. If we think about Huntington, I would add a third prerogative: the unpredictability, which has always characterized the life of those suffering from this disease and whose symptoms’ evolution is deeply unpredictable. The necessity of dealing daily with fear and unpredictability , of families with people who suffer or are at risk of Huntington's disease, makes them the strongest ones. Therefore, I would avoid falling into clichés, nowadays widely spread on the web, on social networks and on TV, that just underline the risk of COVID-19 for those affected by a rare disease: whether it is Huntington or as the SLA and 8000 others little changes; what really makes the difference in this cases is the fragility which, characterises those suffering from a serious disease , regardless to its rarity; it can be Alzheimer's type dementia, cancer, cardiovascular disease or, indeed, Huntington's disease.
So what makes the difference between COVID-19 experienced by a family that deals with Huntington's disease and the others, including us "professionals"? Certainly not pneumonia. That scares everyone, even if those who have Huntington's disease or cystic fibrosis or a thousand other diseses in the advanced stage, may have a greater susceptibility to breathing problems, just like a hardened smoker. If you have the virus, whether you have or don’t have Huntington, you risk to be, fortunately rarely from what I understand, intubated in intensive care. From my personal point of view , what really makes the difference in these cases, is the management of a delicate psychological balance, deeply urged in all of us in this particular moment: it is it in these cases that if you have a fragility, you succumb to the avalanches of these days’ information. For this reason, despite COVID, we have chosen to keep daily connected to many families by keeping our toll-free number 800.388.330 regularly active (thanks Maria ...!), so that us "professionals" can stay in close contact with patients and caregivers.
Every morning we have virtual meetings with patients through a computer or a smartphone, working in advantage on the European JPND-Heal RND telemedicine project on Huntington's disease and rare neurological diseases of which we are the only Italian partners. Our experience is that, like this, people feel reassured and less alone, but we have also realized that families face an objective daily difficulty, related to mood variations, uncontrollable obsessions and the precarious balance of dynamics between family members forced for long times in confined spaces, without many ways out. How to manage the obsession of those who want to go out but are forbidden, want to drive but they can't, or want cigarettes that they can't go out to buy, or simply don't endure being forced inside the house?
Certainly the threat of retaliation on a legal level is not effective: who has a mental disorder or simply a rigidity, has an invisible, but sever, frailty complicated by Huntington's disease that transforms it in an obsession and doesn’t easily accept restrictions. We try to help as we can also through practical or medical advice and we hope to be helpful, but we must admit that this moment risks to break the already fragile balances. Here are some examples of inconveniences that many Huntington patients and their loved ones may experience in this delicate moment:
- Many of them had to stop physiotherapy, speech therapy or other rehabilitative activities.
- Irritability and aggression, still contained for now for what we observe, is likely to falter.
- The already precarious mood in everyone at this time is likely to have an even worse implication in those who experience the problem of Huntington's disease.
- Caregivers are struggling with obsessions in everyday life.
- Those are waiting for the result of a genetic test have to wait longer. It is not possible or conceivable to send a medical report by mail (this too happens to hear) and Telemedicine cannot always be replaced by direct contact.
These are the moments in which you have to be there, in any possible way, in order to try to stem all this. I dare say that those are the moments in which you acknowledge if the "professionals" are truly "professionals" and you see if an organization close to families has truly noble ends and is able to communicate, like the “LIRH’s family” (Foundation / LIRH - Toscana / LIRH-Puglia / Noi Huntington) that is making and will continue to make any possible effort, instead of being a mere container of clichés, slogans, self-referencing, poor in substance and in consistency. We cannot fail to feel particularly close to the many friends and families in northern Italy who are experiencing an authentic nightmare right now. We are sure that this unfortunate situation will end sooner or later.
The SARS-CoV-2, responsible for COVID-19, is definitely a bad virus capable of great damage but pay attention to what it is said around it and let me have a say on this. A letter published on 17/03/2020, practically in these days, on what I believe is the most relevant medical journal in the world which is The New England Journal of Medicine, signed by a team of North American colleagues, clearly describes how the virus propagates: it lasts for about 6 hours on steel, about 7 on plastic, even if it is still traceable for many hours later, and about an hour in the air if vaporized: but what most seems to make the difference is what the authors call "high viral loads" (the quantity of virus) in the upper respiratory tract with the risk that those who are asymptomatic and do not know it, risk to transmit the disease exposing those with who they come in close contact to a massive infection: this must be avoided by respecting the rules recommended by our government.
Finally, I would like to make some considerations on the undergoing trials which, almost everywhere, are subjected to a stop or a slowdown. We hope that the situation in our hospitals will soon improve so that we can get back to Generation HD1. At the moment we cannot risk exposing patients and family members to an infection, and the hospital staff is required for more urgent care functions. However, we will do our best to get back as soon as the minimum conditions will allow it following government and the internal organization directives. This also applies to our observational programs such as Enroll-HD and HDClarity which will restart as soon as it will be possible to reopen the clinics, which are currently reserved only for emergencies.
I conclude by wishing everyone the necessary strength to overcome this moment. Now more than ever it is necessary to make a common effort to protect a delicate thing: the unseen fragility.
Rome - March 20, 2020