Spinal Cord Injury and Coronavirus (COVID-19)
Spinal Cord Injury and Coronavirus (COVID-19)
**Update: 16/03/2020**
As promised, we've committed to updating this blog as often as possible. We will update as often as possible as information, relevant to people with spinal cord injury/damage, comes to hand.
This update comes as our family have made the decision to self-isolate as a family - not due to any illness or know exposure but purely out of precaution. While this may seem drastic/alarmist to some, not all
families have the same health considerations as ours. As Dane has a high-level
spinal cord injury, he is considered “high-risk” should he contract the virus
(people with high level spinal cord injury have reduced respiratory function
and are therefore more susceptible to contracting respiratory diseases, such as
pneumonia). So we've gone beyond what the Australian Government is currently recommending and are therefore taking a more cautious (proactive) approach in the
face of this pandemic by going into “lockdown.” This also includes taking the
our boys out of school/kindy and working from home (which we're fortunate enough to be able to do).
The below updates to this blog have been written in blue font to distinguish the new from the "old".
Stay safe. Stay healthy!
I, like many people in my situation who are reading this
blog, am searching for some clarity regarding how coronavirus (COVID-19) may affect
people with spinal cord injury/damage. I preclude this by declaring that I am
not a medical professional. I am simply a person with lived experience (C5,
quadriplegia) searching through the hysteria and media-hype, trying to find some
source of truth.
Now, I’m not about to dive into the facts and figures regarding
the number of cases here in Australia or around the globe. If you want to find
that information, I recommend heading to the John Hopkins University website
for the latest “headcount” on who’s been infected, where. This blog is solely
dedicated to providing the SCI community with a collation of information
related directly to people with spinal cord injury (or spinal cord damage).
If you, like me, have been searching for information
directly relating to people with spinal cord injury, you’ve probably found it
pretty frustrating and void of any solid information. And that’s the
unfortunate fact; as a new and unknown virus, there simply isn’t enough
information or actual documented cases of people with spinal cord injury having
contracted the virus to know just how/if it affects people with spinal cord
injury to draw any conclusions for the rest of us.
In an attempt though to make it easier on the rest of us, I have pulled together the following information to help navigate through the “noise”.
Relevant Information to the Person with Spinal Cord Injury (published so far)
The first and most obvious conclusion that I (and I’m sure
many others in my situation) have drawn is that the coronavirus is a disease
that effects the respiratory system. As we know, and backed by endless research
including the U.S. National Library of Medicine, who state;
“Respiratory dysfunction is a major cause of morbidity
and mortality in spinal cord injury (SCI), which causes impairment of
respiratory muscles, reduced vital capacity, ineffective cough, reduction in
lung and chest wall compliance, and excess oxygen cost of breathing due to
distortion of the respiratory system.”
Beyond the obvious though, after sifting through the pages
and pages of coronavirus “news” articles, fantasisations and hysteria, I’ve
managed to source a few articles that I feel are worthy of sharing…
Centers for Disease Control (CDC) - USA (https://www.cdc.gov/coronavirus/2019-ncov/downloads/community-mitigation-strategy.pdf)
The Centers for Disease Control and Prevention (CDC) is the
leading national public health institute of the United States. It is also a
United States federal agency under the Department of Health and Human Services
and is headquartered in Atlanta, Georgia. Its main goal is to protect public
health and safety through the control and prevention of disease, injury, and
disability in the US and internationally.
The CDC have released a document on "Implementation of Mitigation Strategies for Communities with
Local COVID-19 Transmission" in which they state that the goals for using mitigation strategies in communities with local COVID-19 transmission are to slow the transmission of disease and in particular to protect:
- Individuals at increased risk for severe illness, including older adults and persons of any age with underlying health conditions (See Appendix A)
- Neurological and neurologic and neurodevelopment conditions [including disorders of the brain, spinal cord, peripheral nerve, and muscle such as cerebral palsy, epilepsy (seizure disorders), stroke, intellectual disability, moderate to severe developmental delay, muscular dystrophy, or spinal cord injury].
The Shepard Centre (https://news.shepherd.org/qa-coronavirus-disease-2019-covid-19/)
- From the limited data that are available, it is possible that older adults, and persons who have underlying chronic medical conditions, such as immunocompromising conditions, may be at risk for more severe outcomes.
- It is critical that you take every possible precaution as you are at greater risk to develop more serious symptoms and may have an increased risk of death.
- The most important precautions are washing hands frequently and avoiding close contact with anyone who may have been exposed to coronavirus.
- As coronavirus is a respiratory infection, you are at much greater risk of severe infection and increased mortality if you acquire coronavirus.
- Avoid traveling to affected areas, traveling on planes or large group gatherings.
- Wash your hands frequently.
The Shepard Centre (https://news.shepherd.org/what-you-need-to-know-coronavirus-and-people-with-spinal-cord-injuries-brain-injuries-or-ms/)
Also from The Shepard Centre, an interview
with their Chief Medical Officer, Dr Michael Yochelson, discussing “What You
Need to Know: Coronavirus and People with Spinal Cord Injuries, Brain Injuries
or MS” where he mentions the following;
- Certainly in those specific patient populations that you asked about and the ones that we treat here at Shepherd Center like multiple sclerosis, spinal cord injury and brain injury; it is likely that there is some increased susceptibility or at least that if they were to develop it, that they may have a more severe illness.
- The challenge that we have particularly with multiple sclerosis is often they are on medications that may cause some immunosuppression and in brain injury and spinal cord injury population, particularly spinal cord; if they already have underlying respiratory disease; they are more likely to have a very severe case if they do develop it.
- There aren’t really any special precautions for someone on a ventilator other than they should certainly use every precaution that we possibly can and again, these are precautions to getting the disease in the first place.
- If somebody, if they have a known person with the Coronavirus; they certainly should not be around that person, travel to areas where it has been noted to be more prevalent and then washing hands is probably the most important thing that anybody can do.
- So, really just taking every possible precaution to avoid getting the disease in the first place.
The Christopher & Dana Reeve Foundation (https://www.christopherreeve.org/blog/life-after-paralysis/the-flu)
While they need little introduction within
the SCI community, the Christopher & Dana Reeve Foundation are dedicated to
curing spinal cord injury by advancing innovative research and improving
quality of life for individuals and families impacted by paralysis. The information
currently available from the Christopher & Dana Reeve Foundation groups
(possibly naively) coronavirus and the flu in the same blog. Speaking to the
similarities between coronavirus and the flu, the Christopher & Dana Reeve
Foundation state that;
- Flu can be especially hard for individuals with spinal cord injury and other types of neurological disease. Lung capacity and volume can be affected by the flu making it more difficult to exchange oxygen in your body. Getting a good deep breath by pulling air into your lungs can be hampered by muscles not working as strongly as necessary.
Spinal Injuries Association – UK (https://www.spinal.co.uk/news/coronavirus-and-spinal-cord-injury/)
Spinal Injuries Association, based in the
United Kingdom, are the expert voice and leading source of information and
advice for people with spinal cord injury (SCI) in the UK. As part of their
work, Spinal Injuries Association (UK) have been advocating to the Department
of Health & Social Care, all Spinal Cord Injury Centres, NHS England and the
Chief Medical Officer within the UK to ensure that they are aware of the
particular vulnerability to virus’ experienced by SCI people and seek
assurances that they are putting appropriate plans in place to mitigate these
needs. Through their work, they have published the following information;
- We are seeking confirmation that the NHS consider and therefore will respond to SCI people as ‘a high risk category’ in relation to the Coronavirus and its likely impact, as many SCI people have a reduced immune system and/or respiratory issues that make them more susceptible to respiratory infections.
- In all enquires about Coronavirus we recommend SCI people state that they are spinal cord injured and therefore potentially a higher risk category for support.
The Perry Cross Spinal Research Foundation (https://www.pcsrf.org.au/special-message-in-relation-to-the-coronavirus-developments/)
Closer to home (for us here in Australia), the
Perry Cross Spinal Research Foundation is leading Australia’s research into
spinal cord injury. The PCSRF aims to facilitate, collaborate and initiate the
connections and research required to find a cure for paralysis. The PCSRF have
released the following statement, delivered by Dr Dinesh Palipana (a doctor
with lived experience in spinal cord injury himself);
In the video, Dr Palipana explains the following;
- People with spinal cord injury, particularly high level ones, are vulnerable to complications from any respiratory infection. This is because their respiratory function can be significantly compromised. Additionally, people with spinal cord injuries are in close contact with different people involved in their life every day. Such contact can increase the risk of disease transmission if appropriate infection control measures are not taken.
- Therefore, it is prudent for people with spinal cord injury to be vigilant during this time and monitor health authority recommendations.
KARE11 (https://www.kare11.com/article/news/health/coronavirus/what-are-the-underlying-conditions-that-make-coronavirus-more-serious/89-c814dce1-d2f9-436c-912a-eda101e73444)
A news source out of Minnesota US reports
that “the Minnesota Department of Health has published a list to help people
understand whether they might be considered high-risk,” including;
- Neurological and neurologic and neurodevelopment conditions (including disorders of the brain, spinal cord, peripheral nerve, and muscle such as cerebral palsy, epilepsy [seizure disorders], stroke, intellectual disability, moderate to severe developmental delay, muscular dystrophy, or spinal cord injury).
Relevant Information regarding Personal Support Workers and Caregivers (published so far)
Related to and often published alongside of all of the above
is the matter relating to Personal Support Workers (or Carers) in relation to
the coronavirus pandemic. I’m going to be brief on this, as everyone’s caregiving
arrangements are different depending upon personal circumstance. The two most
relevant published sources that I’ve found (and there are many more that
deliver a similar message), are detailed as follows;
The Shepard Centre (https://news.shepherd.org/qa-coronavirus-disease-2019-covid-19/)
Again, from the Shepard Centre, USA, they’ve published the following;We recommend you plan ahead by taking these steps (source: Center for Disability Rights):
- Ensure you have sufficient backup caregivers in case your regular caregiver cannot work.
- If a caregiver does not show up for work, ensure you have the ability to get assistance.
- Have at least a week of non-perishable food in your home at any given time and identify people who can assist with shopping or delivery.
- Stock up on other important supplies (e.g., toilet paper, cleaning supplies, hygiene products, etc.).
- Identify a way to make sure you can get your medications in a timely manner such as having friends or family assist you or using a pharmacy that offers prescription drug delivery.
- Plan for your pets by stocking pet food or arranging a backup caregiver.
- Have backup caregivers wash their hands and use hand sanitizer when they arrive and each time prior to touching or feeding you.
- Regularly clean, sanitize and disinfect the surfaces that are touched in your home to prevent spread of infection.
- Use disinfecting wipes on items that are frequently touched.
- Have your caregiver wear a surgical mask if someone close to him/her becomes sick.
- Urge caregivers to seek medical care if they are sick and utilize your backup attendants.
Spinal Life Australia (https://www.spinal.com.au/news/coronavirus/)
From Spinal Life Australia, one of Australia’s
leading organisations delivering services for people with spinal cord damage,
they’ve published the following;
How you can reduce risk
To protect yourself from infection, the World Health Organization recommends to:
How you can reduce risk
To protect yourself from infection, the World Health Organization recommends to:
- Wash your hands frequently with soap and water or an alcohol-based hand sanitiser
- Maintain at least 1 metre distance between yourself and anyone who is coughing or sneezing
- Avoid touching your eyes, nose and mouth
- Practice good respiratory hygiene, including covering your mouth and nose with your elbow or tissue when you cough or sneeze, and disposing of the tissue immediately
- Seek medical advice if you feel unwell
Conclusion
There’s a lot of “noise” out there at the moment, coupled
with a lack of evidence and/or case studies involving people with spinal cord
injuries, it is difficult to know exactly how the coronavirus (COVID-19) may
impact the SCI community. The messages coming from the leading spinal cord
injuries associations around the world though is that people with spinal cord
injury, particularly those with high-level injuries should be considered as “high-risk”
individuals due to their reduced respiratory capacity.
People with spinal cord injury should therefore be extra vigilant and take all necessary precautions to avoid contracting the disease. This may include self-isolation and restricting the number of visitors/caregivers to their homes.
We are aware that the situation relating to the coronavirus is changing daily and so we will be updating this blog regularly as additional information – relating specifically to people with spinal cord injury – comes to hand.
Published by,
Dane Cross
@cross_family_adventures
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