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Newsletter June, 2021

 

Rare Clotting!

Vaccine Induced Thrombotic Thrombocytopenia (VITT)

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By Dr. Charmaine Jones

For people who have the opportunity to receive a viral vector vaccine and for people who may have a choice in vaccines. It can be confusing.

I share this not to scare you off getting vaccinated. Not at all. CoVid is dangerous, and even 15% of mild cases are having long haul symptoms affecting multiple organ symptoms and proving to be long lasting implications. Should you get CoVid, the risk of life-threatening thrombosis from CoVid greatly exceeds the risk of VITT. I share this so that you have the knowledge to decide which vaccine is right for you and to advocate for yourself should you develop this rare complication of the viral vector vaccines. Always seek guidance from your Public Health team and your physicians.

What is VITT? What is causing this concern?

VITT is a rare clotting syndrome that may occur.  It is rare. 

VITT is thought to occur around somewhere between 1 per 26,000 to 1 in 127,000 doses administered for AstraZeneca and 1 in 500,000 for the Janssen vaccine (see Table 1 from the Ontario Science Table brief issued May 11, 2021)  There is not a large difference in rate for age or sex.

It is NOT related to other clotting - such as that from BCP, family history of blood clots, etc. It is an entirely different mechanism. It is accompanied by low platelets. There are no identifiable risk factors. There hasn’t been any indication that I am aware of that those with an autoimmune disease are more susceptible.

It occurs between day 4 and day 28 after the vaccine.  The syndrome is due to autoantibodies directed against platelet factor 4 (PF4) that activate platelets. This releases clotting factors and destroys the platelets.  Clots can occur in any blood vessel - artery or vein - and in multiple places simultaneously. Depending on where the  clots are, the symptoms can vary.

This is what you need to know:

Should you develop symptoms (included but not limited to) clotting (thrombosis) or bleeding between days 4-28 after the vaccine

  • persistent and severe headache
  • focal neurological symptoms (for examples click HERE)
  • blurred vision
  • shortness of breath
  • back pain
  • chest or abdominal pain
  • swelling or redness of a limb
  • pallor or coldness of a limb
  • unusual bleeding
  • multiple small bruises
  • reddish or purplish spots
  • blood blisters

You need to seek medical help urgently. 

This is treatable but time is of the essence.

You need a complete blood count done (CBC) as soon as possible and the results within the hour. If the platelets are low, you need to be seen at a hospital urgently. 

Our Canadian guidance as of  May 2021 is as follows:

For patients who may have the opportunity to receive a viral vector vaccine, the benefits of vaccination must outweigh the risks of VITT This may be the case if the person is at high risk of contracting COVID-19 due to their life circumstances and the rate of COVID-19 circulating in their community, at high risk of severe outcomes from COVID-19 due to their medical history and age, and if access to an mRNA vaccine is delayed.  (click HERE to go to the site)

As of May 3, 2021, NACI (National Advisory Committee on Immunization, Canada) preferentially recommends individuals be offered an mRNA vaccine. They state that a viral vector vaccine may be offered to individuals 30 years of age and older without contraindications, if the individual does not wish to wait for an mRNA vaccine and if the benefits outweigh the risk for the individual. 

I share this not to scare you off getting vaccinated. Not at all. CoVid is dangerous, and 15% of mild cases are having long haul symptoms affecting multiple organ symptoms and proving to be long lasting implications. Should you get CoVid, the risk of life-threatening thrombosis from CoVid greatly exceeds the risk of VITT. I share this so that you have the knowledge to decide which vaccine is right for you and to advocate for yourself should you develop this rare complication. Always seek guidance from your Public Health team and your physicians.

Here are some excellent decision-making aids from the University of Waterloo, ON, Canada. Please download this document: it will be very helpful.

  1. When It’s Best to Get the First CoVid-19 Vaccine Available to You
  2. How CoVid Vaccines Compare
  3. Getting an AstraZeneca or Johnson Johnson Vaccine when the CoVid-19 risk is high

 

Helping Improve our First Australian's Health

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l-r: Health Care  Manager Andrew Urquhart, Tiwi’s Community Worker Helena Warria  , DC’s Susan Hughes,  Tiwi’s Admin/Reception, Kathy  Clayton  and DC’s Terry Jones

DC has recently visited our Tiwi people to facilitate the production of their Medication Adherence video. The filming for this resource will include Tiwi talent in their own country and language to encourage taking their medicines, helping reduce their crippling muscular skeletal and auto-immune disease pain. Our First Australians are twice as likely to suffer with these crippling diseases than the national average. We were warmly received by Pirlangimipi’s health team – Northern Territory, Tiwi, Melville Island (these islands are located half-hour flight north of Darwin)

The Hon. Ken Wyatt, Minister for Indigenous Australians recently wrote to Dragon Claw saying:

“Muscular skeletal diseases are often debilitating, impacting on day-to-day activities and overall quality of life. Initiatives such as this arm Indigenous Australians with the knowledge that there are treatments available to manage their pain and condition more broadly”.


DC Team Leader, Terry Jones said “It is a privilege to be working with the medical profession in the Northern Territory and also with the clinic staff on Melville Island. It’s a great opportunity to find out more about the real day to day issues local sufferers are experiencing and how, hopefully, the video we are producing can help them. The Tiwi Islanders  are renowned for their sense of humour  and their deep  love of their land, family, culture, arts,  footy (AFL), fishing and trade – our stay has helped us learn about their lives and enabled us to share lessons in self-care.

 

Special Announcement: Patients partnering to share their experience, information and hope

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L-r – Dragon Claw/Arthritis Australia’s Patient Advisor, Jill Berensen with Jonathon Smithers CEO of Arthritis Australia and Susan Hughes, Director of Dragon Claw Charity.

We are delighted to announce that Dragon Claw’s patient adviser and newsletter contributor on Covid vaccines, Retired Nurse of 40 years, Jill Berensen has recently been invited to join Arthritis Australia’s Consumer Advisory Panel (CAP).

Jill said “Susan and I had a delicious lunch on Friday 21st May at the Hilton Sydney. It was on behalf of AIPS (Australian Institute of Policy & Science) and Janssen/J&J and highlighted Mark Butler, Shadow Minister for Health, in a post budget discussion of the future of Australian Health. Sitting between us was the CEO of Arthritis Australia, Jonathan Smithers, who warmly welcomed me to the Consumer Advisory Panel and was a witty and delightful lunch companion.

It is with great excitement and humility that I look forward to working with the CAP Arthritis Australia, commencing in early June. I have learned a great deal since my diagnosis of RA in 2003, however, so much more in the 18 months since becoming a member of Dragon Claw and our weekly zoom Dragon Talks. I am hoping these experiences will be of use on the advisory panel as we help plot a better existence for all sufferers of musculoskeletal diseases in Australia.

 

Sleep Hygiene - Book review by DC Patient Advisor Paul Kett

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An interest in sleep and dreams which began for me as a final year university biology student was rekindled recently when I was introduced to the book entitled “Why We Sleep – Unlocking the Power of Sleep and Dreams” written by Matthew Walker, PhD. Walker, professor of neuroscience and psychology at UC Berkley (USA), is recognized for his extensive research into sleep.

In this book he discusses this vast topic under four major topics: what sleep is; why we need to sleep; how and why we dream; and how society’s actions and lifestyles affect sleep for better and for worse. While he reviews most of the science behind sleep in the last 30 years, his references are more frequently anecdotal, than statistical, making for an understandable and fascinating read.

Reading “Why We Sleep” introduced me to many new facts and ideas: for example, that there are times when my body is totally paralyzed; and that there are solid and provable reasons why teens’ waking and sleeping times are often very different from older adults, making “early-start” school times incompatible with sound learning habits.

Perhaps more importantly for those with RA and other inflammatory conditions, this book may well help us understand why sleep is so important for us, and how we may improve our sleep patterns and effectiveness.

Walker, Matthew, “Why We Sleep – Unlocking the Power of Sleep and Dreams.” 2017, Scribner, New York NY.  Also recommended: Listen to/watch Matthew Walker’s podcast with Dr. Rangan Chattergee HERE

 

Functional Nutrition

by Charlotte Hill

 

Charlotte

Sleep is the lynchpin of health which holds everything together. It is a key focus of any client I work with whether they have an autoimmune condition or not. Adults should aim to get between 7 and 9 hours of sleep.  Sleeping less than <6 hours per night increases risk of all cause mortality by 12%!

Believe it or not, diet can have a significant impact on sleep and making a few simple changes can make a big difference. Here are my top recommendations:

  1. Eating a whole foods diet - As discussed previously, eating lots of whole foods and minimal processed foods is crucial for health and fundamental for sleep. Aim to 3 regular meals which are balanced in healthy carbohydrates, fats and protein and if you have an energy lull between meals include a healthy snack e.g handful of nuts, soft boiled eggs and carrot and pate / nut butter / guacamole. Here is a reminder of foods to enjoy and avoid.
  2. Enjoy your tea or coffee or other caffeinated drinks before 12 noon - caffeine stimulates the production of cortisol which in turn inhibits melatonin, our sleep hormone. It takes our body approximately 6 hours to remove half the caffeine from our body! We want as little left in our system at night when we are trying to sleep!
  3. Minimise alcohol consumption, especially in the evening - alcohol is both a diuretic that encourages your body to excrete more water and leads to dehydration. These lead to sleep disturbances due to increased need to urinate in the night or by waking up thirsty needing a drink. In addition, alcohol consumption can also lead to too low blood sugar in the middle of night which will wake you up.
  4. Eat your evening meal at least 2 hours before you go to bed - your body needs time to digest food before bedtime, so the body is able to sleep deeply and also detoxify overnight.
  5. Include complex carbohydrates e.g. starchy vegetables in your evening meal - this is important to those who wake up during the night, as the carbohydrates help the amino acid tryptoph.coan enter the pineal gland and contribute to the production of melatonin which is needed to stay asleep. Such carbohydrates include: sweet potato, parsnips, carrots, beetroot and other root vegetables. Tryptophan is found in protein containing foods, examples include: pasture raised eggs and poultry (especially turkey), wild caught fish, sesame seeds / cashews / walnuts, grass fed beef or lamb and high quality full fat dairy.
  6. After implementing the above and you are still struggling or you would like further support, make sure you reach out to a practitioner to support you through diet and lifestyle changes and supplementation. Waking up at certain times of the night can indicate imbalance in certain organ systems e.g. liver (detoxification organ), adrenal glands (for stress management) in addition to food sensitivities and having poor gut health. Improving your sleep can have a drastic impact on the rest of your health. 
www.chillandnourish.com

 

Our Facebook has a new administrator

Sarah Loten

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Do you regularly have your Dragon Claws into online Social Media?!

With increasing use of social media, especially during this pandemic year, we want to increase our activity and communication on Facebook and Instagram.

Did you know that we already have a Facebook page? Notices and Dragon Claw activities have been posted. We do not receive much traffic so we are meeting to increase the engagement level of our page. We want it be an interesting and encouraging place for Dragon Claw community members to go to!

The 4 pillars of Dragon Claw are:

  1. Education: there is so much to learn and do, to make life with these conditions manageable.
  2. Charity/outreach community work: DC is involved in several valuable, indeed potentially life changing projects
  3. People: that’s YOU! Our members are wonderful, encouraging and interesting people with much to share.
  4. Dragon Talks: a highlight of the week for Dragon Claw membership! These talks include ongoing speakers, videos, educational and supportive discussions. Watch for the schedule!

Watch for Dragon Claw Facebook/Instagram posts.  Coming soon, to a screen near you!

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Sarah Loten

 

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

June/July

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

June 8/9 Sleep, part 2 (Denis)
June 15/16 Dr. Paula Harvey: our cardiovaskular system risk (see bottom)
June 22/23 Coffee time (no agenda)
June 29/30 Annette's Story
July 6/7 Common Threads in our stories
July 13/14 Coffee time (no agenda)
July 20/21 Art Therapy: a hands-on experience (Jan's d-in-law, Katrina)
July 27/28 Finding meaning (Robin, Paul
 

 Dr. Paula Harvey will be joining us on June 15/16

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This is very special: Please make every effort to attend!

Dr. Paula Harvey is an Australian medical graduate. After completing her specialty training and subsequent PhD in 1999 she re-located to Canada as a NH&MRC Scholar to complete post-doctoral training in cardiovascular physiology at the University of Toronto.

In 2002, Dr. Harvey was appointed to faculty in the Division of Cardiology, University Health Network. In 2010, Dr. Harvey joined Women's College Hospital (WCH) as director, Cardiovascular Research and subsequently also as Medical Director, Women’s Cardiovascular Health Initiative, the WCH cardiac rehabilitation program. In December 2013, Dr. Harvey was appointed division head, Cardiology, and most recently, in July 2014, interim Physician-in-Chief, Women's College Hospital.

Dr. Harvey’s clinical and research focus is on cardiovascular disease in women across the lifespan, with a special interest in hypertension and atherosclerosis, cardiovascular disease prevention through lifestyle interventions (such as exercise) and cardiovascular disease in women with multiple complex diseases.

Risk of cardiovascular disease in autoimmunity.

  Please contact Charmaine This email address is being protected from spambots. You need JavaScript enabled to view it. for the zoom link or if you see a session of particular interest, and would like a link to a taped session.

Tuesdays North America 8 pm ET
Wednesdays Australia 10 am AET

 

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