There were many inspirational stories coming out of the Tokyo Olympics. However one that may have particularly stood out to the LFJ community was that of Kirani James of Grenada. The 2012 400m Olympic champion experienced major setbacks after his diagnosis with the autoimmune condition Grave's disease in 2017 and the loss of his mother in 2019. But on August 5, against a stellar line up, James staged an amazing comeback to win a Bronze medal, his third consecutive Olympic medal in that event.

Graves disease, like Lupus, is an autoimmune condition, in which the body’s natural defence system becomes dysfunctional and attacks healthy tissues, causing inflammation and illness. In Grave’s disease, this inflammation primarily targets the thyroid gland, a gland at the front of the neck that produces hormones critical for regulating the body’s metabolism.

James’ story recalls that of other athletes who have fought autoimmune disorders to stand out in their fields. One such person is famed US Olympian Gail 

Devers who battled severe Grave's disease that threatened to end her career. After embarking on an intensive and lifelong treatment programme, Devers came back to win consecutive Olympic Gold in Barcelona and Atlanta. She continued to compete with distinction until age 40 and today remains an advocate for Grave's disease awareness with the goal of making sure that millions affected “are under a doctor’s care”. She told CNN news:

"I believe I'm stronger at having to go through what I went through ... Everybody's faced with challenges. We all feel like sometimes walls are closing in on us and there's no way out.What do you do? You remember that strength and resilience that you have when you step on the line."

Tennis star Venus Williams also endured debilitating symptoms of Sjogren's syndrome for 7 years before being diagnosed in 2011, coming back to win gold in 2012 and 2016 Olympics. In an interview with Prevention Magazine in 2019, Williams had this advice for persons battling autoimmune disease. "Don’t be discouraged, because what [you're] going through is similar to other people," she says. "Talk to those people who understand you or have a similar condition, reach out, and build a [support] team. Don’t isolate yourself. Don’t give up."

As we salute our athletes who gave their all in Tokyo, we want to also recognise all our brave lupus warriors, everyday heroes who who defy the challenges and continue to step out on the line of life each day and inspire others. We salute you!

https://edition.cnn.com/2021/07/06/sport/gail-devers-olympics-graves-disease-spt-intl/index.html

https://www.prevention.com/health/a28446557/venus-williams-sjogren-syndrome/

Lupus Foundation of Jamaica is a volunteer-run, member-based charitable organisation in operation since 1984, dedicated to improving the lives and outcomes of persons with lupus through information, support, advocacy and research. To learn more, join, volunteer or donate visit www.lupusfoundationjamaica.orgor call the help line at 8767783892.

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Kingston, Jamaica, May 20, 2021 – For Immediate Release

Thousands of Jamaicans continue to suffer the debilitating effects of Lupus, known medically as Systemic Lupus Erythematosus, a lifelong disorder of the immune system. The Lupus Foundation of Jamaica (LFJ) continues to support the fight against Lupus through its education programmes, advocacy and support to persons living with the disease. 

Monday May 10, 2021 marked the annual observation of World Lupus Day and the kick-off of the 37-year-old Charity’s month-long drive to raise funds to support the fight against Lupus. The Foundation is inviting the support of the media, corporate Jamaica and the public at large to “Be Grand and Give a Gran’” in support of their mission.

The autoimmune disease, which occurs at higher rates in Afro-Caribbean populations, is estimated to affect some 6000 Jamaicans. The goal of raising Four Million Dollars will guarantee more services for members, discovery and support of new patients, and support a variety of programmes essential to improve outcomes for persons with the disease. Each year the LFJ's public awareness campaigns for World Lupus Day (May 10) and Lupus Awareness Month (October) reach thousands of patients and members of the public via media interviews, virtual events, information sessions, social media platforms, displays at hospitals, clinics and parish libraries, as well as a “Put On Purple” initiative with distribution of purple ribbons and branded merchandise through the Organisation’s Lupus Learning Centre in New Kingston or via their online store geared at raising awareness and breaking down stigma concerning the illness.

A member-based organisation, the LFJ's approximately 300 Members benefit from free psychological counselling, a member medical assistance fund, pharmacy discounts, a monthly e-newsletter, monthly support group meetings, WhatsApp support groups, hospital visits/support calls and access to guidance and information from health professionals. The LFJ also plays a leading role in Medical Professional Education on the subject through its Annual Lupus Symposium which brings international and local experts to present the cutting edge in Lupus care as well as address practical topics to improve the outcomes and quality of life of patients. The organization also continues to facilitate the donation of medical equipment to improve detection and treatment of lupus locally.

The funding of the Foundation's annual budget of 9 million dollars is greatly dependent on volunteer labour and donations in cash or kind from small as well as corporate donors to subsidise membership dues and fund essential programmes, as well as sponsorships of events and programmes.

The Foundation is therefore calling for volunteers and donations, as it seeks to mobilize response across the island, especially at a time when it faces both increased demand for services and funding challenges during the COVID19 pandemic.

Lupus, known medically as Systemic Lupus Erythematosus, is a disorder of the immune system.  It causes the immune system to become over-reactive and produce antibodies that damage normal healthy cells and can be life-threatening.  While Lupus patients have an over-reactive immune system, in most cases, they are not able to effectively cope with common infections. This makes Lupus patients among the high-risk groups for contraction of Covid-19. 

Donations to the registered charity are tax-deductible and can be made conveniently online on the LFJ website www.lupusfoundationjamaica.org/donations or to their account with banking details as follows: 

Lupus Foundation of Jamaica 

NATIONAL COMMERCIAL BANK   

Branch Name: Knutsford   
Branch Address: 1 Knutsford Blvd, Kingston 5, Jamaica
Branch #: 33077     
Bank Account #: 332062956   

Currency: JMD   

Account Type:  chequing /Current. 

ABOUT LFJ

The Lupus Foundation of Jamaica is a member-based, volunteer-run, charitable organization in operation since 1984. It aspires to improve the lives and outcomes of persons affected by lupus through a better awareness and deeper understanding of the disease.  Among its major activities are patient support and counselling, advocacy for access to care and promotion of research in the field.   

To learn more about Lupus and LFJ programs and services, please visit the Lupus Foundation of Jamaica’s website: www.lupusfoundationjamaica.org , or their social media pages: https://www.instagram.com/lupusfoundationja/, https://www.facebook.com/Lupusfoundationjamaica/. 

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For more information about this topic, you may contact Desiree Tulloch-Reid at 1-876-574-4954 or rheumjamaica@ymail.com

Government and Media Join The Lupus Foundation of Jamaica in the call to increase knowledge and support for persons with Lupus.

Kingston, Jamaica, May 17, 2021 

Thousands of Jamaicans continue to suffer the debilitating effects of Lupus, known medically as Systemic Lupus Erythematosus, a lifelong disorder of the immune system. The Lupus Foundation of Jamaica continues the fight against Lupus through its education programmes, advocacy and support for persons living with the disease. 

Monday May 10, 2021 marked the annual observation of World Lupus Day under the theme Make Lupus Visible. The Foundation joined with lupus groups across the world highlighting the need to increase awareness and knowledge of the disease, its wide impact and the need for earlier diagnosis, research, and access to treatment, health care and support for the many adults and children affected. The autoimmune condition which occurs at higher rates in Afro-Caribbean populations is estimated to affect some 6000 Jamaicans and an estimated 5 million persons worldwide.   

Prime Minister Hon Andrew Holness, who in 2019 announced the addition of lupus to the list of conditions to receive medication subsidies from the National Health Fund, also joined in the call on May 10 through his Facebook page, endorsing the Foundation’s efforts and encouraging Jamaicans to support the initiative. “Let’s unite to spread awareness and increase understanding about Lupus.”

In observing the Day, the Foundation sought to increase visibility and share knowledge about Lupus through print and broadcast media as well as social media platforms, displays at hospitals, clinics and parish libraries, and a “Put On Purple” initiative with the distribution of purple ribbons and branded merchandise through the Organisation’s Lupus Learning Centre in New Kingston and via their online store.

The organisation also staged a free Virtual Event, Unmasking the Many Faces of Lupus, which opened with a video-recorded message from Dr the Hon Christopher Tufton, Minister of Health & Wellness, who applauded the Lupus Foundation of Jamaica for the work it has been doing.  “The Government has also played its part in supporting initiatives that improve the awareness and understanding of the disease…I look forward to our continuous collaboration and I implore all Jamaicans to join together and support persons living with the disease.”

The Virtual Event, viewed live by over 500 persons on the Foundation’s YouTube and Facebook pages, was hosted by media practitioner Roxene Nickle of The Edge 105FM and featured several persons sharing their journeys with lupus, while medical specialists provided insights on the diagnosis and treatment of the disease.  Other highlights included vox pop interviews with members of the public - "word on the street about lupus", a virtual tour of the Foundation's Learning Centre and volunteers sharing their experiences working with the volunteer-run charity.

Dr Desiree Tulloch-Reid, Consultant Rheumatologist and President of Lupus Foundation of Jamaica commented on the theme chosen. “Lupus and many autoimmune conditions are often referred to as “invisible illnesses” because there is often a lack of awareness and understanding both of the condition and the persons affected .“Lupus is also often referred to as ‘the Disease of Many Faces’ because of the various ways lupus can present itself. By “many faces” we also wanted to highlight the diversity of persons affected and their varied experiences during a lifelong journey with the illness”.

May 10 also kicked off the 37-year-old Charity’s month-long drive to raise funds to support the fight against Lupus through its programmes to assist persons living with the disease. The Foundation is inviting the support of the media, corporate Jamaica and the public at large in its call for volunteers and donations, as it faces both increased demand for services and funding challenges during the covid19 pandemic.

ABOUT LFJ

Lupus, known medically as Systemic Lupus Erythematosus, is a disorder of the immune system.  It causes the immune system to become over-reactive and produce antibodies that damage normal healthy cells and can be life-threatening.  While Lupus patients have an over-reactive immune system, in most cases, they are not able to effectively cope with common infections.  This makes Lupus patients among the high-risk groups for contraction of Covid-19.

The Lupus Foundation of Jamaica is a member-based, volunteer-run, non-profit organization in operation since 1984. It aspires to improve the lives and outcomes of persons affected by lupus through better awareness and a deeper understanding of the disease. Among its major activities are patient support and counselling, advocacy for access to care and promotion of research in the field.

To learn more about Lupus and LFJ programs and services, please visit the Lupus Foundation of Jamaica’s website: www.lupusfoundationjamaica.org , or their social media pages: https://www.instagram.com/lupusfoundationja/, https://www.facebook.com/Lupusfoundationjamaica/.

Click Here to View May 2021 Newsletter

BARK DI TRUTE

Posted by Vernon Lloyd Derby at 22:00 

Dr. Winsome Beverley Christie President of the Pharmaceutical Society  of Jamaica

According to the Centre for Disease Control and Prevention (CDC, 2013, )Systemic lupus erythematosus (SLE), is the most common type of lupus. SLE is an autoimmune disease in which the immune system attacks its own tissues, causing widespread inflammation and tissue damage in the affected organs. It can affect the joints, skin, brain, lungs, kidneys, and blood vessels. There is no cure for lupus, but medical interventions and lifestyle changes can help control it.

Brittney Taylor Assistant Secretary of the Pharmaceutical Society of Jamaica

 Prevalence of Systemic Lupus Erythematous in Blacks

In recent years, SLE has been on radar as that autoimmune disease that is seen on the rise amongst both sexes of all ethnic groups. Interestingly, approximately ninety percent (90%) of SLE cases are seen in women. Of all the ethnic groups the rates appear to be higher inblack women. (Danchenko et al.,2006).

An ethnic diverse study conducted in Michigan, concluded that the prevalence of SLE was 10-fold higher in females, with a 1 in 537 approximationsin black females. (Somers et al., 2014) Although, the prevalence appears to be higher in black women, the rates vary for black women living in different areas of the world.For example, reports from an early study done solely on black people in West Africa, proved the prevalence of SLE to be rare however, the ratesin said women living in America, the Caribbean and Europe was relatively high (Symmons DP, 1995).

Kevar Bennett  Secretary of the Pharmaceutical Society of Jamaica.

Sang-Cheol B et al. highlighted in a review, that the prevalence of SLE progressively increased as blacks migrated from Africa to both North America and Europe suggesting that dietary and environmental contributions may have influenced the rates.  A common finding that was noted in various epidemiological studies done over the years;is that the prevalence of SLE in blacks tends to be higher than that observed in otherethnic groups.  (Lewis and Jawad, 2014). According to a study conducted by the University Hospital of the West Indies, Department of Medicine in 2008, a Lupus Registry was established to help with the analysis of the data and it was concluded that a total of 107 patients met the criteria for diagnosis of SLE at the referral centre, 96.3% of them female. Positive antinuclear antibodies[ANA ] (90.7%), arthritis (70.0%), malar rash (53.5%) and a positive dsDNA (40.1%) were the more frequent manifestations and diagnostic indices of the disease. Up to 41.7% of the SLE population suffered some form of complication.

SLE AND COVID

Several autoimmune rheumatic diseases such as systemic lupus erythematosus (SLE) result from immune-mediated inflammation and tissue damage caused by immune system dysregulation. As a result, patients with autoimmune rheumatic disease have been identified as a vulnerable population at risk for severe COVID-19 illness. Although a strong antiviral immune response is needed for viral clearance, hyperactive immunity has been linked to cytokine storm and tissue damage in COVID-19 patients . Both SLE and COVID-19 have been shown to manifest multi-organ complications of interstitial pneumonia, cytopenia, arthralgia, myocarditis, and hemophagocytic lymphohistiocytosis . Due to similarities in disease characteristics, treatment of patients with SLE may provide insights into development of therapeutic options for COVID-19.

Lupus treatment

The treatment modalities will focused on two types of lupus: Discoid lupus and Systemic Lupus Erythematosus.

Discoid lupus is a skin problem that causes raised red areas (called "plaques") and scars on the skin. Discoid lupus can happen anywhere on the skin but usually happens on the upper body. The most common places for discoid lupus are the face, neck, scalp, and ears.

 Symptoms of discoid lupus: red, scaly plaques. These plaques tend to slowly expand at the edges and then heal. When they heal, they leave behind discolored skin and sunken scars. Discoid lupus on the scalp can cause hair loss.

Sometimes, people with discoid lupus also have lupus in other parts of the body. This is called "systemic lupus." But most people with discoid lupus just have lupus in their skin.

Treatment involves mainly topical applications but can include corticosteroids and medication similar to those used for the more generalized systemic lupus erythematosus.

• Steroid medicines that come in ointments, creams, or gels – These steroid medicines reduce inflammation and help the skin heal. Examples include fluocinonide or clobetasol.
• Medicines called calcineurin inhibitors that come in ointments or creams. Examples include pimecrolimus (brand name: Elidel) and tacrolimus (brand name: Protopic).
• Steroid medicines that come as injections, are given locally into the portion of skin that is affected.          

Sytemic lupus erythematosus treatment depends on symptoms and how the person is feeling. The goals of treatment include:

• Ease your symptoms
• Bring down inflammation
• Prevent and relieve flares
• Prevent organ damage and other health problems

Pain and inflammation associated can be treated with non-prescription drugs such as

• Acetaminophen
• Aspirin
• Ibuprofen
• Naproxen

Antimalarial drugs Pain Antimalarial Drugs such as

hydroxychloroquine" or "chloroquine

They might help with skin rashes, mouth sores, and joint pain. They may also lower your chance of blood clots, which is a concern in some people with lupus.

Antimalarial drugs protect against skin damage from ultraviolet rays in sunlight and may protect your body against organ damage linked to lupus.

Corticosteroids

These can be a pill form or IV, they work fast to ease swelling, warmth, and soreness in joints that’s caused by inflammation. They can also prevent long-term organ damage.

Corticosteroids can have serious side effects like:

• Higher chance of infections
• Fragile bones or bone damage, especially in your hips
• Muscle weakness
• Diabetes
• Cataracts

You may also have weight gain, bloating, and mood changes. Your doctor will probably give you the lowest dose they can and taper it off if your symptoms go away for a time.

Immunosuppressive drugs

Like corticosteroids, these drugs curb your immune system, bring symptoms under control, and help prevent long-term organ damage. Your doctor may prescribe them if corticosteroids haven’t helped your symptoms.

Common immunosuppressive drugs for lupus include:

• Azathioprine (Imuran)
• Cyclophosphamide (Cytoxan)
• Methotrexate (Rheumatrex)

In some cases, you may use immunosuppressive drugs along with corticosteroids. That way, you'll be taking a lower amount of each type of drug, reducing the possible side effects.

With both types of drugs, you and your doctor need to weigh the risks of side effects against how well they ease your lupus symptoms.

Side effects of immunosuppressive drugs

Immunosuppressive can make it hard for your body to fight infections and raise your chances for some kinds of cancer. One particular immunosuppressive drug azathioprine may cause pancreatitis or a form of hepatitis. Cyclophosphamide may lead to bladder problems, hair loss, or fertility problems. Methotrexate can cause nausea, headaches, mouth sores, sun sensitivity, lung infections, and liver damage.

Your doctor may also prescribe one or more of these types of drugs:

• Anticoagulants. These thin your blood to prevent clots, a life-threatening lupus symptom.
• Monoclonal antibodies. Belimumab (Benlysta) is the first drug created just to treat lupus. Given intravenously (in a vein) or subcutaneously (under your skin), it targets specific immune cells. It may help reduce your need for steroid treatment, but it hasn’t been tested thoroughly for the most severe forms of lupus. Rituxan (Rituximab) is another monoclonal antibody that can sometimes treat lupus when other treatments haven’t worked.
• Repository corticotropin injection. A medicine called H.P. Acthar Gel may help your body make its own steroid hormones like cortisol to fight inflammation.

Side effects of other medications

Common side effects of anticoagulants include bloating, diarrhea, upset stomach, vomiting, and loss of appetite. You may rarely have bruising, a skin rash, a sore throat, back pain, or yellow skin and eyes (jaundice).

Monoclonal antibodies might cause problems like headache, nausea, hives, or blood pressure changes. These can usually go away over time.

Acthar Gel may cause swelling, changes in blood pressure or glucose tolerance, mood changes, stronger appetite, or weight gain.

Complementary treatments for Lupus can be supportive and aimed at reducing stress, improving the immune system and reducing inflammation and pain. They may include:

• Acupuncture
• Biofeedback
• Massage
• Meditation
• Chiropractic treatments
• Herbs and other supplements

Talk to your doctor or pharmacist before trying any alternative or complementary treatments for lupus. Also ask your pharmacist to run a drug interaction on their “system” to see if there are any potential or real interactions.

Lifestyle Changes

A healthy lifestyle will help you feel better and prevent flares. It can also help prevent problems linked to lupus, like kidney disease, heart attack, and stroke.

Try these tips:

• Eat a well-balanced diet.
• Quit smoking (or don't start) to protect your heart and blood vessels.
• Get plenty of rest to ease fatigue, a common lupus symptom.
• Exercise most days to help sleep, mood, and heart health.
• Always use sunscreen when you go out.
• Get pneumonia and flu vaccines to protect against infections.

For Discoid lupus some tips to help cope with the disease include but may not be limited to:

• Staying out of the sun in the middle of the day (from 10 AM to 4 PM), when the sun's light is strongest
• Stay under a sun umbrella, tree, or other shady spot
• Wear sunscreen – Put sunscreen on all parts of the body that are not covered by clothes. Then reapply sunscreen every 2 to 3 hours, or after you sweat or swim. It's important to choose a sunscreen that:
• Has an SPF of 30 or greater – SPF is a number that tells you how well a sunscreen protects the skin from UV light.
• Protects against 2 types of UV light, called "UVA" and "UVB." (Sunscreens that offer both UVA and UVB protection are sometimes called "broad spectrum.")
• Has not expired or is not more than 3 years old
• Wear a wide-brimmed hat, long-sleeved shirt, and long pants
• Do not use tanning beds
• If you smoke, it's a good idea to quit. Discoid lupus seems to be more severe in people who smoke. Also, smoking seems to make certain medicines for discoid lupus less effective.

If you are bothered by the way discoid lupus looks on your skin, you can use special cosmetic products to make the skin changes less obvious.

 Contributors:

• Dr. Winsome Beverley Christie, President of the Pharmaceutical Society of Jamaica,
• Kevar Bennett, Secretary of the Pharmaceutical Society of Jamaica.
• Brittney Taylor Assistant Secretary of the Pharmaceutical Society of Jamaica,

References

Bae SC, Fraser P, Liang M. The epidemiology of systemic lupus erythematosus in populations of African Ancestry. Arthritis & Rheumatism 1998; 41:2091-2099

Danchenko N , Satia JA, Anthony MS. Epidemiology of systemic lupus erythematosus: a comparison of worldwide disease burden. Lupus 2006; 15:308-18

Lewis MJ, Jawad AS. The effect of ethnicity and genetic ancestry on epidemiology, clinical features and outcome of systemic lupus erythematosus. Rheumatology 2017; 56:67-77

Somers EC, Marder W, Cagnoli P et al. Population-based incidence and prevalence of systemic lupus erythematosus: the Michigan Lupus Epidemiology and Surveillance program. Arthritis Rheumatol 2014; 66:369-78

Symmons DP. Frequency of lupus in people of African origin. Lupus 1995; 4:176-8

Discoid Lupus

https://online.lexi.com/lco/action/doc/retrieve/docid/disandproc/3634237?cesid=23AbZOOrhGy&searchUrl=%2Flco%2Fa

 Lupus Treatment

https://online.lexi.com/lco/action/doc/retrieve/docid/disandproc/4734765?cesid=7oZ8qt5MQEP&searchUrl=%2Flco%2Fa

Complementary and Alternative (CAM) Treatments of Lupus-LUPUS UK

Lupus Treatment: Medications and Alternative Treatments (webmd.com)

https://www.frontiersin.org/articles/10.3389/fimmu.2020.589474/full

Guan W, Ni Z, Hu Y, Liang W, Ou C, He J, et al. Clinical Characteristics of Coronavirus Disease 2019 in China. New Engl J Med (2020) 382:1708–20. doi: 10.1056/NEJMoa2002032

HEALTH & WELLNESS MAY 11, 2021 WRITTEN BY: GARFIELD L. ANGUS

Minister of Health and Wellness, Dr. the Hon. Christopher Tufton, says the Government spent more than $12 million on drugs for lupus patients in the last financial year, and more persons should register and access the support.

Addressing a virtual forum to observe World Lupus Day on Monday (May 10), Dr. Tufton said more than 900 patients benefited.

“It was a commitment kept by the Government to improve the outcomes of persons affected by lupus, by providing specialist care and vital drugs free of cost through the public health system, and now a private system subsidised by the National Health Fund,” the Minister added.

He pointed out that the NHF subsidises more than 120 medications for lupus care, and persons with the disorder can access services at 105 fully operational Drug Serv pharmacies and 49 private/public pharmacies.

Dr. Tufton said the Government has been playing its part to advance services for the patients, by supporting initiatives that improve the awareness and understanding of the disease.

“I salute the Lupus Foundation of Jamaica for the work that it has been doing. I implore all Jamaicans to join together to fight lupus and support persons living with the disease,” the Minister said.

The event was organised by the Lupus Foundation of Jamaica (LFJ), under the theme ‘Unmasking the Many Faces of Lupus’.

Meanwhile, President of the LFJ, Dr. Désirée Tulloch-Reid, said the best option for persons who are living with the ailment is to control it through treatment and consistent monitoring.

“We don’t have a ‘cure’… but treatment has come a long way. Now it is possible for most people to achieve control of their disease with the right treatment,” she told the forum.

Dr. Tulloch-Reid said the “goal” for all those persons affected is to “gain control of the situation, and maintain control”.

The forum heard from many persons who are living with the disease, medical experts and other persons, who shared their experience with the ailment.

Lupus attacks tissues in various parts of the body, leading to tissue damage and illness. While the ailment affects predominantly young women, both genders can be affected by the illness, including children.

CALLING ALL LUPUS WARRIORS SEND US YOUR PHOTO OF YOUR FACE and help us build a COLLAGE as we showcase the MANY FACES OF LUPUS and help raise awareness about lupus.  We need at least 100 faces!  We can do it!                            Just email or whatsapp your pic to info@lupusfoundationjamaica.org or 8767783892 or tag us on our social media pages Facebook: https://www.facebook.com/Lupusfoundationjamaica/ Instagram: https://www.instagram.com/lupusfoundationja/  (make sure to like, follow and share).   Submissions needed by Wednesday May 5, 2021.   This is just an example of what we would like to create This image is courtesy of Lupus Canada 7 Barbados Avenue Kingston 5, Jamaica, W.I. 876-754-8458 Helpline 876-778-3892 (Voice/Text/Whatsapp) Email: info@lupusfoundationjamaica.org