Patient Story

This is an inspiring story made in 2011 by our member Andrew Thirwell who has since built a strong career and happy family life with 2 young sons. This video should give all Lupus patients great hope for a healthy and happy future. With thanks to Andrew, paying respect to his late mother Patricia Thirwell and acknowledgement to www. Lupusnsw.org.au

“I’m an active, athletic young man. Suddenly, I’m overwhelmed with fatigue, sleeping 15 hours and still tired, and I’m losing a huge amount of weight and muscle mass” ….

              For more of this story, click HERE.

Dr. Charmaine’s feature story

Lupus (Lupus Systemic Erythematosus)

Lupus is Latin for "wolf": the disease was so-named in the 13th century as the rash was thought to appear like a wolf's bite. There aren’t many wolves about now! This is  currently commonly known as a “butterfly rash”. The rash is not often as dramatic as in this photo. The rash will come and go. 

Lupus is an autoimmune disease: our immune system “mistakenly” attacks our own tissues. As with other autoimmune diseases, there is a genetic component but that alone is not enough to trigger the illness. Other factors are often multiple and may include environmental factors, toxins, previous trauma, viral/bacterial infections, and a highly permeable gut (leaky gut) as well as lifestyle factors such as sleep disturbances, stress, diet, and smoking. The disease, as with other autoimmunities, is more common in women. Lupus is often aggravated by heat and/or sunlight. 

Autoantibodies of lupus can be varied and directed towards almost any organ system, making the symptoms multiple and varied. Flares and remissions are common. This can lead to difficulty in diagnosis. The first symptoms often start in early adulthood (perhaps related to hormonal fluctuations). They can be vague (such as fatigue, muscle weakness, fever, myalgia) and can resolve before seeking attention, only to reoccur in the future. The suspicion of Lupus can develop over time - looking at the history of many and seemingly disparate symptoms. In this way, the disease can feel “wolf life” - rather stealthy. 

The autoantibodies can provoke arthritis, skin rashes, digestive, and breathing issues. They can affect the heart, kidneys (hypertension) and nervous system as well. No two people with Lupus will be the same. As with other autoimmune diseases, there is no cure, but there are ways to manage and mitigate the disease. It is important to control the background inflammation to avoid organ damage. This is done by judicious use of specific medications accompanied by lifestyle modifications. As with RA, Lupus sufferers are more prone to cardiovascular events. (a topic for another Dragon Talk). 

Sarah has Lupus. “Living with a Limp” is written by Sarah as she muses on how best to live as a mother, wife, daughter, teacher, friend and farmer. Sarah is sharing with us “real health” as described by Daisaku Ikeda, found on page 129 of My Grandmother’s Hands, by Resmaa Menakem. 

“Health is not simply the absence of illness. Real health is the will to overcome every form of adversity and use even the worst of circumstances as a springboard for new growth and development. Simply put, the essence of health is the constant renewal and rejuvenation of life”

Poem by Lupus Patient

Living With A Limp by Lupus Patient Sarah Loten

Main goals of my life, the ones that really matter to me, for living, for work, caring for my family, animals, land:

connection, 

tender leading love 

harmony. 

Nothing else really matters. Illness, disease can’t affect these main goals.

In fact, perhaps it enforces them?

How to go about living with an illness/condition?

Walk with a limp but keep walking. Go slower if need be. That’s ok. Just go.

Use this condition as an opportunity to re-write the health script of my past, which involved denial, or avoidance. Make a new script of good living with a limp.

Accept.

Be kind.

Life is not a performance.

Stay joyful, present, patient.

Whatever will be will be. Live anyway.

This could be an opportunity, a gift to give to my kids, and others around me, as a way of living well with a chronic condition or disease.

If you need to go half speed on a given day, be kind to yourself and go half speed.  Life is not a race.

You may not be able to run the marathon, and if you do, you will be slow, maybe even last, but that’s ok. Run, ride, swim, walk...do these things anyway. Do these things because you love them.

That matters.

Take the attitude of a child with a disability, like so many I’ve worked with. Do what works on that day, in that moment, whatever is fun. Participate! Show up!

Remember, it’s not a performance, it’s not about future potential.

It’s about now.

Don’t act like an over protective or under protective parent.

Act like a child: live in the moment, take it as it comes.

There is no shame in defeat, stepping back or stepping down.

Just do the best you can under the circumstances, because that’s all we can ever do.

This is just another phase of life. We go through many. We are made of many fragments that are formed, reformed, transformed. We pass through life and on to the next and this is passed on to the generations after us. Don’t be afraid of the ‘metamorphosis’. Live the characteristics of life that you want lived in others, now, and after you are gone.

Life unfolds in all its hardship and beauty. Let it happen as it will.

Nurse Jill’s update on Covid vaccines

The latest information re: AstraZeneca Vaccine (in Australia) is that it is no longer being given to under 50 year old's because of recent incidences of clot development. Pfizer has taken this prestigious position.

But looking at ALL the Covid-19 vaccines again, they all offer between 95 and 100% protection for serious illness and death. However, when it comes to preventing infection, they ALL drop to 61 to 95% efficacy. Different vaccines. Different efficacy levels. But the same protection against serious illness and death.

Antibodies hog the anti-virus conversation because they are much easier to measure and study than the other components of the immune system and scientists are starting to understand how many of them we need to be immune. T cells on the other hand, are much more of an unknown quantity and are less well understood.

Vaccines, we know, stop people becoming seriously ill, but some people have still become mildly unwell. Vaccine-induced antibodies offer instant defense against the virus the moment it enters your body. They sit in your throat and float through your blood and when they come across the virus, they stick to it, gumming up the machinery it uses to infect cells.

T cells are your immune system’s cavalry. They wait in your lymph nodes, under your arms and at the base of your neck. Vaccines arm these troops, but when they spot an invader, they still take a few days to grow up into a huge army before launching their attack.

The virus gets through antibody defenses and we get sick. Then, bang, in comes the T cell-cavalry, wiping out the virus before it can make us seriously ill or kill us. If all vaccines are activating T cells, that might be why they all prevent serious illness and death.

Antibodies generally work by gumming up the spike SARS-CoV-2 uses to infect cells. To do that, the antibody has to be exactly the right shape to fit onto the spike. If the spike changes shape, even slightly, the antibodies cannot stick. That’s what the South African and Brazilian variants appear to have done. Preliminary evidence suggests the South African variant seems to have changed shape in such a way that AstraZeneca’s vaccine is not effective against it at all.

The participant's in the South African study became sick, however none became seriously ill or died, which implies a significant T cell response. Therein lies the great hope that these Covid-19 vaccines will protect us better than we might think.

Functional Nutrition

by Charlotte Hill

This month, I am delving into ‘what we eat’.

This is something so underrated yet so unbelievably important. 

For example:

1. It is the building blocks of our body making every single cell and being responsible for all the chemical reactions that keep us alive.
2. It impacts the expression of our genetics by turning genes on or off. A good diet can help turn beneficial genes on and vice versa - the science of epigenetics.
3. It influences the health of the gut and can help us regulate our immune systems. 

When people have an autoimmune condition what we eat is even more important as most that do have underlying nutritional deficiencies, can have poor gut health (whether known or not) and imbalances in their immune system - good quality food helps improve all of this! 

So what should you eat? My philosophy is to focus on eating nutrient dense whole foods that do NOT need an ingredient label!  This is essentially full of products that come directly from source rather than out of packet, box, jar or a carton. For example a diet full of vegetables, fruit, good quality fat and proteins and herbs and spices that are full of nutrients and can be anti-inflammatory which has so many benefits compared to a diet full of ultra processed vegetable oil, sugar, additives and preservatives that have no nutrients in, can take nutrients out of out body and can be inflammatory. 

I would like you all to consider, what are you eating? Have you ever looked at the ingredients of common products that you use? What is your breakfast like? This is the starting point for our day and can make a huge difference when we get it right! Here is a starter guide of foods to enjoy and foods to avoid and on my website there are recipes for both a Breakfast Frittata and a Chia Seed Bircher which are both nutrient dense options to start the day! 

Changing my diet was the start of the rest of my life living with an autoimmune disease. If you would like to read more about it here. 

www.chillandnourish.com

Our tentative (always open to change!) schedule for DragonTalks

May/June

Please share with anyone with an autoimmune condition who might benefit from a safe space to share and learn.

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