COVID, Strokes, Rare Disease, Love and Everything in Between


The Link between COVID-19 and Stroke & What To Do

Stroke survivors are considered ‘clinically vulnerable people’ and are at a greater risk of pneumonia and other COVID-related complications. COVID-19 patients are at higher risk of having a stroke; conservative estimates suggest 5% of those with COVID-19 will have a stroke or a similar event during their illness. Those who have suffered a stroke are at higher risk of having another one.

What’s causing it?

It is too early to understand the mechanism behind COVID-19’s connection to stroke fully. Several studies have proposed a hypercoagulable state, an abnormally increased tendency toward blood clotting (coagulation), partially to blame. COVID-19 is attracted to specific receptors found in cells on the artery walls. The virus damages these cells causing vessel wall rupture and high levels of blood clotting. These clots can block critical arteries to the brain, depriving it of blood and oxygen, causing a stroke and possible damage to the brain.

COVID-related strokes have been observed even in younger patients too. If a person is already vulnerable or has previous damage to their brain from past strokes, they could be at higher risk of extensive injury and disability.

What to do? 

If you have had a stroke, take extra precautions to protect yourself from COVID-19 such as wearing a mask, practising social distancing and frequently washing your hands.

Reducing any risk factors, you may have for another stroke is also essential in protecting yourself. Lifestyle factors like physical activity levels, nutrition and whether you are a smoker can impact this.

COVID interrupts care for those with a rare disease and the importance of consistent care during the pandemic

 A survey found 9 out of 10 people living with a rare disease have had their care interrupted due to COVID-19. Over half of surgeries or transplants needed by those with rare diseases have been postponed. Most have also experienced appointment cancellations for doctors and various therapies. These interruptions have had consequences on the safety and quality of life among those who are vulnerable. This has been led to high anxiety about access to treatment.

In the same survey, 47% of respondents said they had avoided going to the hospital due to COVID-19. While the fear of contracting COVID-19 is valid, the risk of contracting COVID-19 at a doctor’s appointment is low as long as preventative actions are taken. The consequences of not attending necessary medical appointments can be severe. The Australian Department of Health has advised people with medical conditions to obtain their medicines and treatment as usual while following recommended health advice. 

Cancer, heart disease, diabetes and illness won’t wait, so neither should you.

Resources:
Does coronavirus cause stroke? A look at the current research
Strokes in young, asymptomatic COVID-19 patients on the rise 
The importance of not delaying medical tests during COVID-19
Info on Telehealth


Rare Disease Day 

The 28th of February marks Rare Disease Day 2021. The day is to raise awareness about rare diseases and the impact they have on people’s lives. It is estimated 1 in 20 people will experience a rare disease in their lifetime. Even though the conditions are rare, they are many (around 6000 of them). People in the rare disease community find similar experiences even if they don’t have the same illness. For example, many people with rare diseases experience difficulties and inequities securing a diagnosis, care and treatment. The current health care system is set up for treating common conditions, those with a rare disease often face additional barriers in their care. Rare disease day is a call for medical and social equity for people living with a rare disease.

Events marking the occasion will be happening in more than 100 countries. Look out for Brisbane City Hall and the Story Bridge, all lit up in the rare disease day colours, green, pink, and blue.

Visit Rare Voices Australia for more info on rare diseases and how you can be supported.


New Venues Opening for Groups

One of the most common requests we receive from support groups is venue-sourcing. While there are some great cafe options, some groups are looking for more privacy. We were happy to find out about three new options…

If you need help finding somewhere to meet, please don’t hesitate to contact us.


Recommended Viewing: The Power of Vulnerability (TEDTalk)

“Yes, I am imperfect and vulnerable and sometimes afraid, but that doesn’t change the truth that I am also brave and worthy of love and belonging.”

– Brené Brown

Adopting a practice of openness and awareness of your environment as well as your own thoughts, feelings, and triggers will help you recognize when you’re disengaging because you’re afraid. Dr Brown describes this attentiveness as “pay[ing] attention to the space between where we’re actually standing and where we want to be.”

Here are some things to keep in mind as you practice “daring greatly” in your own life:

  • Recognize that facing vulnerability takes enormous courage. Take small steps (like asking someone what they are thinking) and be proud of your bravery when you do.
  • Let go of the constant worry about what other people think of you. Most people are focused on their own internal struggles, not you.
  • Feeling overwhelmed? Focus your attention gently on your breath and the sensations in your body for a few moments before returning your attention back to the task at hand.
  • Don’t worry about being perfect. in fact, don’t even consider it. No one is perfect, and the more you hold yourself to an impossible ideal, the more easily you will give up.