APRIL 2021 NEWSLETTER

LFJ NEWS

Vaccinations Begin for Lupus Patients over 40

In a press release dated April 10, 2021, the Ministry of Health and Wellness announced that as of April 10, 2021 vaccinations would now be open to persons over 40 with co-morbidities as well as all persons over 50 years. Persons in these categories were invited to schedule their vaccine appointment or to visit several Blitz sites across the Island accommodating on-site registration during the weekend lock-down.

One such person was LFJ Volunteer Sherry Darosa who visited the National Arena on Sunday April 11, 2021 and received her first of two doses of the Astra Zenica vaccine. “I was very impressed by how organised and smooth it was. Big up Ministry of Health!”

Sherry DaRosa - Diagnosed with Lupus in 2014

Persons with lupus who are over 40 (but less than 50) years old are encouraged to take along documentation of their medical condition such as a doctor’s note, prescription, or clinic appointment card, and may consult with their doctor about how to manage their medications after vaccination. Patients who have received the vaccine should continue to take the usual precautions against transmission of the virus including sanitising hands often, wearing masks, and social distancing. Vaccination appointments can be made online at http://www.moh.gov.jm or by calling 888-ONE-LOVE (663-5683)

UPCOMING EVENTS:

April 15, 6:00 pm Support Group Meeting

May 10, 7:00 pm
World Lupus Day
WLD Special Event


"Powered Up"  - Support Group Meeting Thurs Apr 15 @ 6:30 pm.  LFJ member Dr Marsha Smalling shares from her new book and tips to "live out loud with courage, commitment, and confidence".

 

Merchandise is still Available for purchase

Show your lupus colours and support when you wear one of our LUPUS Warrior T-Shirts.  Available with 3 sayings, visit our website to get yours, or follow the link below.

ORDER NOW

ASK THE EXPERT LIVE Recap

On our last episode of ask the Expert live on  April 7, 2021,  we were delighted to have as our guest Consultant Endocrinologist Dr. Patrice Francis Emmanuel answering your questions on Lupus and Bone Health.

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Here are some pointers we took away from the session:

⦁ Our bones are not static but active, dynamic organs that we have to keep healthy.

⦁ Our maximum bone density is obtained during our twenties and declines after 30 and more rapidly after menopause

⦁ Poor bone health can lead to  Osteoporosis  - a condition of severe low bone density.  This is associated with a high risk of fragility fractures which can occur with minimal trauma or none at all

⦁ Fractures can lead to disability, need for expensive joint replacement or a hunched or stooped posture (in case of spine fractures) or chronic pain

⦁ Bone health is positively affected by healthy diet, adequate calcium and vitamin D, and weight-bearing exercise

⦁ Bone health is negatively affected by smoking, alcohol, chronic inflammation (eg lupus flares) and high or prolonged exposure to steroids; pregnancies, mineral deficiencies and hormone disorders can also contribute.

⦁ Many persons with lupus are at higher risk of bone problems than average, especially if they have frequent and prolonged flares, long exposure to steroids, have the need to avoid sun, or are less due to pain or fatigue.

⦁ Persons with lupus should take care to follow practices that promote healthy and should screen early for bone density if they have any of the above risk factors

⦁ Bone density is best measured at the hip and spine should be reviewed by your Rheumatologist, Endocrinologist or other specialist experienced in helping you manage your bone health.

⦁ In addition to supplements medications such as bisphosphonates can help preserve or increase density and protect against fractures

⦁ those who have experienced fractures or complications should consult with their doctor about measures available including procedures or rehab interventions to correct or prevent progression. 

⦁ Another bone complication affecting lupus patients is called  Osteonecrosis, or avascular necrosis, which can occur without warning causing severe damage to the bone of major joints.  Persons who are on high and prolonged doses of steroids are most at risk. Lupus patients experiencing unexplained pain in a single joint, that is not due to a flare, should notify their rheumatologist immediately to be checked for this complication.

In case you  missed it, you can watch a recording of the Programme here :https://youtu.be/8YqiDSAU15g  Don't forget to like, subscribe to our Youtube page and select the notification bell to be alerted when we add new content. Join us for our next episode on May 5, 2021, 6 pm on Facebook or Youtube when we talk about  Medication Side Effects. 

Contributed by:  Desiree Tulloch-Reid, Consultant Rheumatologist


ASK THE EXPERT IS ON OUR YOUTUBE CHANNEL.

CLICK HERE TO WATCH IT!

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BLASTS FROM THE PAST:
LFJ Memories –

Peek into LFJ History with Dr Karel DeCeular:

This is the first in a series of interviews capturing memories and snapshots of LFJ History and milestones from the many LFJ volunteers who have served since the Organisation was started in 1984. 

We had a chat with Consultant Rheumatologist Dr Karel De Ceulaer a native of Belgium and a naturalised Jamaican since 1978. Affectionately known as “Dr D”, Dr DeCeulaer is the longest-serving president of the LFJ, serving continuously in this role from 1994 to 2013 and eventually appointed President Emeritus since 2019. He has continued to play an active and critical role, especially in scientific and educational efforts.  We chatted with Dr DeCeulaer in April about some of his memories of serving with LFJ.

Dr Karel De Ceulaer

“Before my time Dr Winston Williams started the Lupus Foundation, in the 80s, and the Foundation was supporting patients who needed to have kidney biopsy done.

I was lucky to get to know Andrew Mannes, who was a chemist but had lots of experience in laboratory procedures. He came to Jamaica as a volunteer running the lab at the Fish clinic in Papine. Then we worked at the Anti-cardiolipin antibody assay, which he set up all by himself. In those days we made plates of agar mixed with Cardiolipin, filled holes with patients' sera, and then measured it using a standard curve and a magnifying glass. It was all rather low tech, but it was cheap and it worked. Eventually, Prof Smikle took over the test, using commercially available substrate and running it in an Elisa setup. So we proceeded to do the Lupus Autoantibodies.

In addition to making diagnostic testing available, public and member education were also at the forefront: “As you know education was done with 3 monthly meetings and the Annual Symposium. Dr. Graham Hughes, who had been in Jamaica for one year in the late '70s studying lupus, gave several lectures over the years. And others like David Isenberg, Wendell Wilson, Watson Buchanan and others came and contributed. 

“In order to create more awareness of lupus, the girls also went to Festivals such as the Jerk Festival in Portland, to hand out flyers and create more awareness. Of course, the difficulty here was the sun exposure which is always a factor in those gatherings.”

There is more to come for those who remember or want a primer on this fascinating history. Look out for our next installment as we continue to chat with Dr D and other LFJ veterans. If you are or know of a longstanding member with memories and stories to share, get in touch with us so we can learn more.


ASK THE EXPERT

Ask The Expert Live is Back!

Stay Tuned for the next episode!

Just text back to this number or send us an email at: info@lupusfoundationjamaica.org
Looking forward to your feedback!

Tell Us Your Story!

Share Your Story! Our stories are some of our most powerful weapons in the Fight against Lupus - helping raise awareness and encouraging our fellow warriors. Send us your story in 200 words or less or your 60 sec video clip by April 25, 2021 to be included in our World Lupus Day campaign and event on May 10, 2021. Visit our website for more details, tips and scripts.

Children and Youth with Lupus: If you are a young person or child living with lupus, a parent or an adult who developed lupus before age 18, we want to hear from you as we focus this year on better understanding, meeting the needs, engaging with and empowering this special group!

Children and Youth with Lupus: 

If you are a young person or child living with lupus, a parent or an adult who developed lupus before age 18, we want to hear from you as we focus this year on better understanding,
meeting the needs, engaging with and empowering this special group!

ANNOUNCEMENTS

Volunteers Needed!  
Get in touch with us by April 18, 2021 if you wish to offer your skills in our upcoming
World Lupus Campaign:

  • Administrative Support - communications and scheduling
  • Monitoring Phonelines, email and IM
  • Video recording/editing
  • Graphic Design
  • IT/Streaming
  • Digital Marketing/Social Media
  • Writing Scripts and Press Releases

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