News

  • 25 Mar 2020 9:01 AM | Olga Browne (Administrator)

    Dear Members and Friends

    There has been growing concern among members of the community who may be anticipating or having trouble obtaining their prescription drugs, particularly hydroxychloroquine (Plaquenil, HCQS, Apo-hydroxy), following recent reports of the drug's possible use for treating Covid19 infection.  It should be noted studies are still underway of this drug and several other medications being tried to ameliorate the effects of severe covid19 infection and are still not conclusive.

    What is hydroxychloroquine and why its use for lupus?

    1. Hydroxychloroquine was originally a developed for the prevention and treatment of malaria but now is most widely used for the control of a variety of inflammatory/autoimmune diseases such as rheumatoid arthritis and lupus.  
    2. For persons with lupus, hydroxychloroquine is considered an essential drug recommended for all lupus patients, due to its important role in stabilizing disease and preventing flares.  Flares in lupus are periods of increased disease activity associated with uncontrolled inflammation that can lead to increased symptoms, risk of organ damage or sometimes life-threatening complications.  
    3. Hydroxychloroquine also lowers the risk of cardiovascular events such as stroke, heart attack and uncontrolled clotting problems that are particularly common in lupus patients.  
    4. Used alone or in combination with other drugs, it has a unique and essential role in in lupus treatment. 

    Managing Your medications during the Covid19 outbreak

    1. We recognise that lupus patients are considered to be among the vulnerable group for severe Covid19 infection both as a result of the disease itself and the immunosuppressive drugs often required for controlling the disease.  
    2. It is not advised, however, that patients with lupus stop their medication due to fear of contracting Covid19 disease, because stopping your treatment can lead to a flare of the lupus.  Should a flare occur, in addition to the risk of organ damage, the risk of infection may become even higher. Remaining on your medications including hydroxychloroquine helps prevent such flares.  
    3. In the case of Covid19 or other infection, steroids and some immunosuppressive medications may need to be adjusted as instructed by your doctor; however, hydroxychloroquine is not considered immunosuppressive and can usually be continued in the presence of infection.  

     

    Ensuring Your Supply of Medication

    In the presence of the outbreak, the Foundation has advised its members to take maximum precautions to avoid infection and also to ensure that they maintain a continuous supply of all their medications, including hydroxychoroquine.  

    There are, fortunately, several measures now in place to assist you with maintaining a steady supply of your medication during the covid19 outbreak.:

    1)    Lupus patients along with other vulnerable patients can secure up to three (3) months’ supply of your medications on a single visit to the pharmacy.  This applies to public patients (using Government hospitals and clinics) using the DrugServ pharmacies and also to private patients using private sector pharmacies

    a)    Private sector patients can purchase 3 months' supply drugs at reduced cost due to the following:

    i)       National Health Fund subsidy has been extended to up to 3 months:  

    (1)  lupus is covered on the individual benefits programme - systemic lupus since April 2019 and other forms of lupus including discoid lupus since February 2020 - Lupus patients should ensure they have signed up for this programme

    (2)  the subsidy available under the NHF has been extended to up three months (instead of the usual 30 days) due to the covid outbreak until July 2020

    ii)     several insurance companies have extended the allowable supply of drugs to be covered in one refill by an extra month, up to three months in the case of Sagicor and two months in the case of Medicus.

    b)    For Public Sector users (who utilise government hospitals and Clinics) utilising NHF's DrugServ Pharmacies

    i)       up to 3 month's supply of medications can now be dispensed, subject to availability, for all patients with chronic conditions, instead of the usual 30-day supply

    ii)     additional supplies have been ordered in anticipation of increase demand and supply chain disruptions

    iii)    prescriptions remain available free of cost as usual

    2)    To minimise risk of exposure while filling prescriptions, patients are being encouraged to use the drop off and pick up service offered by their pharmacy 

    a)    For Public Sector users of DrugservPharmacies convenience measures include

    i)       scheduled refill service

    ii)     priority service

    iii)    Quick Prescript app via your smart phone or kiosk

    3)    If you do not have sufficient prescription refills to tide you over, we suggest you:

    a)    Keep your scheduled doctor's appointment - once you are satisfied that proper measures are in place at your doctor's office to prevent contact spread and allow for appropriate social distancing.

    b)    Get in touch with your doctor and request prescription refill.  Be prepared to update your lab work or to go in for an appointment if you have not been seen recently and the doctor requires this.

    c)     Take along an NHF Registration Form (yellow) or Update form (blue) if you are not yet registered with the NHF or your records have not yet been updated to reflect your lupus diagnosis

    We remain in close communication with Government agents and professional bodies to see what can be done to give priority to lupus patients in securing their medications in the context of a possible shift in demand or supply.

    We are thankful for the spirit of corporation being exhibited and join you in praying for our community and other vulnerable persons, our front-line workers, leaders and the nation for God's continued protection and guidance during this challenging time.

     

     

    LUPUS FOUNDATION OF JAMAICA

    You are not alone!

     


  • 12 Mar 2020 11:23 AM | Olga Browne (Administrator)

    COVID-19 - Update


    COVID-19 

    We acknowledge that everyone is worried about corona. What is it and what do we know about it?  Covid-19 is a newly emerged virus from the corona family that has been spreading in some parts of Asia and more recently in Europe with a few mostly imported cases being documented in cities in the USA the Caribbean (two cases confirmed in Jamaica) and has been declared a pandemic by the WHO. 

    Presentation

    It causes flu-like symptoms that in some cases (less than 5 %) have resulted in respiratory (lung) complications that in some cases have been fatal.  However, it has been noted that a greater proportion of the more severe cases have been in older persons and those with chronic conditions including diabetes, heart disease, high blood pressure or respiratory diseases

    While we do not know if any lupus patients have been affected, we know generally that persons with lupus are more vulnerable to infections due to the disease itself and well as some of the medications used to control it. 

    What should you do?

     

    a)  Avoid Infection

    Make every precaution to avoid infection:

    • Wash your hands frequently with soap and water (palm, between fingers and back of hand for at least 20 seconds, especially after going to the bathroom, before eating, and after blowing your nose, coughing or sneezing. If soap and water are not available, use an alcohol-based hand sanitizer with at least 60% alcohol. Avoid close contact with people who are sick, and stay home when you are sick.
    • Sensitise your household members and co-workers about the above as this will also help to reduce your risk of infection.
    • Travel internationally only when necessary and with proper assessment of the risk in the area and with the appropriate precautions.  Be advised by your doctor.  If booking some time forward, take out travel insurance in case you need to reschedule.

    Managing Lupus Medications during Covid-19 

    It is important to know how to manage your meds.

     

    • Do not stop your medications because you are worried about getting coronavirus.  Being on steroids and medicines known as "immunosuppressives" like azathioprine (imuran, Azoran) or mycophenylate mofetil (cellcept) can lower your body's defenses to viruses.  On the other hand having a flare of your lupus disease also lowers the defenses, with persons with lupus having the highest risk of infection and succombing to infection, during a flare.  So stopping these medicines may not help your situation.  Also you might end up needing even higher doses of medicines including steroids to get back under control.
    • On the other hand, should you develop an infection or suspected infection, some of your medications may need to be adjusted or stopped.  Your doctor will need to advise you and closely monitor your lupus in this case.
    • Take hydroxychloroquine even if you are sick.  Hydroxychloroquine is one of the medications recommended for lupus patients to help keep lupus stable (prevent flares) Hydroxychloroquine is not "immunosuppressive" ie lowering ones defenses and does not need to be stopped during an infection.  In fact it is being tried by some doctors in asia for covid cases which could potentially affect supply, so make sure you are properly stocked.

     

    Know the signs so you can recognise them in yourself or others.

    Covid-19 virus can cause mild to severe respiratory illness

    Symptoms can include

    • fever
    • cough 
    • shortness of breath

    and may occur 2-14 days after exposure (contact with the person or surface that transmitted the virus)

    Seek medical advice 

    • if you develop symptoms, and have been in close contact with a person known to have COVID-19 or 
    • if you live in or have recently been in an area with ongoing spread of COVID-19.

     

    Educate others.  Preventing spread if everyone's business:  

    Avoid spreading the virus in the same way you avoid contracting the virus

     wash your hands often with soap and water for at least 20 seconds especially after blowing your nose, coughing or sneezing; going to the bathroom and before eating or preparing food

    • avoid touching your eyes, nose and mouth with unwashed hands
    • stay home when you are sick
    • cover your cough or sneeze with a tissue, then thow the tissue in the trash

     

    References

    cdc.com

    who.int

    jis.gov.jm

    moh.gov.jm

     

    Helpful links:

     

    https://www.cdc.gov/coronavirus/2019-ncov/about/share-facts.html

    hhttps://jis.gov.jm/jamaica-and-the-coronavirus/

    https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

     Manpower and Maintenance Service Limited’s Workshop - CORONAVIRUS: FACTS NOT FEAR-FIGHTING BACK


  • 10 May 2019 8:42 PM | Olga Browne (Administrator)

    The Jamaica Gleaner, May 10, 2019Today is World Lupus Day, and everyone is called to participate in observing the day by bringing awareness to the disease. Meet Heather McKoy, a wife, mother and manager who has been living with systemic lupus erythematosus for the last 17 years.

    “It started with sharp, shooting pains in my wrists and shoulders. Then, I noticed each time I bent to pick up something, I had to take a breath before getting up as the pain was so severe,” she said. “I had just been promoted. My girls were two and six years old. I was too busy being ‘supermom’ to pay attention to a little pain,”she told The Gleaner.

    McKoy was later asked by a good friend, Carlene Gayle, to give blood as she needed to do surgery. After doing so, however, she was shocked to be summoned to the office by the nurse, who asked if she had been feeling sick lately, to which she replied, “Not really.” The nurse proceeded to inform McKoy that she needed to make an appointment with her doctor urgently and that because she was anaemic, she would not be able to donate blood.

    “Following my appointment with the doctor and a course of blood tests, I was referred to an oncologist. Some time later, I got the flu and had a fever that kept me in bed, so I went back to the doctor. She prescribed medication that made me feel better during the day, but by nightfall, the fever came back,” she explained.

    According to McKoy, one morning, after having some fruits, she started feeling nauseated and rushed to the bathroom, where she threw up everything until she saw specks of blood. She then called her husband, who rushed her to the doctor, but she fainted and only heard the name of the doctor and her location before she passed out again.

    “A battery of tests was done to determine what was happening to me, and by the second day, I felt strong enough to go the bathroom and was shocked to see a dark discolouration across my cheeks and nose – the first typical symptom of systemic lupus erythematosus,” McKoy recounted.

    EVERYTHING MAGNIFIED

    “I was blessed to be working in a place where my illness was understood, but at the same time, when I was at work, I always delivered because I could be feeling a little ill and have to ask for sick leave the next day,” she said.

    McKoy explained that with lupus, everything is magnified, so if there were a problem with her eyes, she would have to see a specialist, and things like infections or the common cold cannot be taken lightly.

    “I have lost my hair three times since having lupus. One time, I lost all the hair on my body except for my eyelashes,” she said. “The first time it happened, I bawled while the hairdresser sang to me as she cut my hair. I had to let it sink in that this was my new normal.”

    The other two times were not easy, but by this, McKoy was accustomed to her ‘normal’ changing once again. She explained that as a result, she always keeps her hair and nails looking good because she is determined not to wear her sickness.

    Lupus has caused her kidneys to deteriorate, and she has to be taking the medication that is used after an organ transplant is done. She has had to battle fibroids and skin ulcers, which are painful, and often, a minor surgery is the only way to get rid of them. Yet, when people see her and ask how she is doing, if her reply is “not well”, they say, “But you don’t look sick,” and that is because pity is not what McKoy wants.

    “My children push me to go the extra mile, and the support from my work and church community helps me. Having a husband who also understands is a plus while fighting lupus,” McKoy stated. “You also have to have a good relationship with your doctors because you may have to call or visit them at odd hours of the night. This is lupus.”

    McKoy has made many changes over the last 17 years living with lupus, all in order to see her children reach to the point of taking care of themselves. That is her dream, and to attain that, she will do anything. (Link to Full Article)

  • 22 Mar 2019 4:09 PM | Olga Browne (Administrator)

    The Jamaica Gleaner, March 22, 2019 - The Lupus Foundation of Jamaica (LFJ) board and its members have welcomed Tuesday’s announcement by Prime Minister Andrew Holness that lupus is to be included as one of the chronic conditions attracting a subsidy from the National Health Fund (NHF). (Link to Full Article

  • 20 Mar 2019 10:09 AM | Olga Browne (Administrator)

    JIS News, March 20, 2019The Lupus Foundation of Jamaica has welcomed the Government’s decision to subsidise medication for persons living with the disease, at a cost of $340 million annually.

    During his contribution to the 2019/2020 Budget Debate in the House of Representatives on March 19, Prime Minster, the Most Hon. Andrew Holness, disclosed that starting April 30, Lupus will be added to the list of illnesses covered by the National Health Fund (NHF).

    “The expense sometimes causes patients to use other medications, which can increase the risk of a flare-up. For a Lupus patient, this could mean kidney failure, heart damage, lung damage, seizures, stroke, severe pain, fever, being hospitalised for months, and even death,” the Prime Minister said.

    He told the House that after dialogue with a family member of a 23-year-old university law student who is beset by the disease, he was moved to ensure that medication can be reasonable for the estimated 6,000 persons who are living with the illness.

    Meanwhile, President of the Lupus Foundation of Jamaica, Dr. Desirée Tulloch-Reid, told JIS News that with kidney complications, it can cost a patient with Lupus up to $120,000 each month for medication, and the Government’s decision shows compassion.

    “We applaud this measure as an act of compassion, and an indication that there is greater awareness of the illness and persons it affects,” she said.

    Dr. Tulloch-Reid noted that the expense to treat the disease is distressing to many persons, and the organisation would like all the drugs used for the illness to be on the subsidised list.

    She said that while the disease affects predominately young women, both genders can be affected by the illness, including children.

    “So, the need to ensure that persons affected have access to affordable treatment, is really welcomed, and we thank the Government for it,” Dr. Tulloch-Reid said. (Link to Full Article

  • 15 Feb 2019 9:06 AM | Olga Browne (Administrator)

    The Jamaica Gleaner, February 15, 2019Danielle Hall, who has been living with lupus since 2011, was saddened when one of her friends died from the deadly disease.

    “Three years into my diagnosis, I was added to the WhatsApp group, and me and one other member had an instant connection, and we were friends ever since,” Hall said.

    “When she died, I took it hard because we were so close. I started becoming depressed because she was not much different from me or much older than I was,” Hall explained.

    She stated, however, that while some may see lupus as a death sentence, she is not afraid of death. She lives knowing that she can die at anytime and, as a result, she tries to encourage others who have lupus.

    “I take each day as its own, because each day comes with its own set of symptoms and issues But as a child of God, I believe that my life has a purpose and I am using this time to fulfil that purpose,” Hall expressed.

    CHRONIC AUTOIMMUNE DISEASE

    According to the Lupus Foundation of America, lupus is a chronic autoimmune disease that can damage any part of the body, whether it is the skin, joints, and/or organs. Our immune system creates antibodies which protect the body from things that do not belong, but with lupus, the immune system cannot tell the difference between the bad tissues and the healthy tissues and, as a result, it creates antibodies that attack and destroy the healthy tissues. These usually cause inflammation, pain, and even worse, damage in various organs or parts of the body.

    Hall told The Gleaner that the medication to treat the disease is very expensive and makes it harder to cope; and finding the funds can be frustrating.

    “Lupus is not covered under the National Health Fund, and I remember having to get a medication called Imuran and I had to pay $30,000 for the medication,” Hall said. “Imagine getting $80,000 for your salary and spending all of that money on one medication, plus the others!”

    The frustration is further compounded by Hall having a nine-to-five job, which, she notes, is not conducive to the illness, because not every morning is a good morning. As a result, she has turned her work area into another home because she suffers from extreme temperatures and in the blink of an eye, she would need blankets while everyone else in the office is hot.

    At 28 years old, Hall is afraid to lose her teeth due to the severe sjogren’s syndrome – where she has decreased amount of tears and saliva – and gastrointestinal reflux disease. She also suffers from sleep apnea, chronic sinusitis, fatigue, and the fear that any of her organs could be affected next – and the result would be deadly.

    HOSPITALISATION

    Hall has been hospitalised 12 times due to lupus, most of which was spent at the Kingston Public Hospital (KPH). She stated that the care and support she has received from that facility is exceptional, and not only from the medical staff, but also from the customer service department.

    “I mean, honestly, if it wasn’t for KPH and the DrugServ Pharmacy, I do not know how I would manage,” Hall said.

    She said that she attends all her clinics free of cost and it is the only place she feels comfortable being admitted to.

    After all these hardships, Hall still finds a way to assist someone else.

    “I can’t remember what it feels like to be pain-free. If I woke up without pain tomorrow, I would think that I am dead,” Hall explained, “This illness has been bad, but it has made me stronger, and as a result, I can help someone else and be there for them.”

    In the midst of the pain, however, Hall dreams of writing a book and becoming a lupus advocate, where she can help to educate those with lupus and sensitise those who do not understand the effects of the disease.

    Hall said that sharing her story is not for pity but to inform, encourage and motivate. (Link to Full Article

  • 8 Feb 2019 9:02 AM | Olga Browne (Administrator)

    The Jamaica Gleaner, February 15, 2019 -  “I live as if I would die tomorrow; I live as if I could live forever.”-Danielle Hall

    Sounds contradictory right? But that is the mantra that guides Danielle Hall as she is living with lupus.

    According to Lupus Foundation of America, lupus is a chronic autoimmune disease that can damage any part of the body whether it is the skin, joints, and/or organs. Our immune system creates antibodies which protects the body from things that do not belong, but with lupus, the immune system cannot tell the difference between the bad tissues and the healthy tissues and, as a result, it creates antibodies that attack and destroy the healthy tissues. These usually cause inflammation, pain, and even worse, damage in various organs or parts of the body.

    In as little as four months, two prominent Jamaicans have died from this illness; comedienne and media personality Elva Ruddock died on October 7, 2018 and Miss Jamaica 2014 finalist, Zandrea Bailey died January 13. Both of whom did not allow the illness to take over their lives, but like Hall, has aimed to live a fulfilling life despite the often debilitating symptoms of lupus.

    Hall shared with The Gleaner that she was diagnosed with lupus after she had an infection.

    “I was officially diagnosed with lupus in 2011 after contracting meningitis in 2008,” Hall stated. After treating the meningitis, she had kidney infections and seizures which included severe pain. “I had back-to-back kidney infections following the meningitis and was later told that I have fibromyalgia and rheumatoid arthritis because they did not know what was happening,” Hall stated.

    She explained that she started to experience almost all the signs and symptoms of lupus, except the butterfly rash, but it was not until a second antinuclear antibody (ANA) test-the first test was negative- was done, that she got the confirmation that she has lupus and her life changed since then.

    “I remember when I was at UWI-at the time I was a part-time student- and I was working while studying,” she stated, “I would go to work from 7:00 a.m. and leave at 8 a.m. for my class at 9 a.m., only to leave UWI at 11 a.m. to go back to work until 4:30 p.m. when I would leave for classes until 9 p.m.,” Hall said.

    As a result of this, Hall had a seizure and had to sit out the remainder of the semester due to stress and being overworked.

    She further explained that surviving lupus is about support and knowing one's condition.

    “No lupus case is the same so what affects me, may not affect someone else,” she said, “But having someone to talk to, someone to be there for you through the small things, it makes a world of difference.”

    Hall’s main support system was her mother, but tragedy struck in 2016 when her mother died.

    “My mother was my rock through my diagnosis and the ups and downs of my illness,” Hall explained. “I remember coming out of the hospital January 2016 after a huge flare up and by February my mother was admitted.”

    She said it was difficult making several trips to the hospital to visit her mother, while she juggled everyday life with lupus. Her mother died a week after Hall completed her final exams at UWI.

    “I remember that I was diagnosed with the Zika virus during the days leading up to my mother’s funeral and I didn’t go to the hospital because I couldn’t picture being at the hospital and my mother wouldn’t be there to visit,” Hall recalled.

    She is grateful for the support from her immediate and church family and close friends, along with groups that she is a part of because they have helped her to cope. She looks to the Lupus Foundation of Jamaica, but mainly depends on the ladies in her WhatsApp group to encourage her while she does the same for them.

    “We started with approximately seven persons and now there are over 20 of us in the group, but we lost four people between 2014 and now,” Hall explained.

    According to lupus.org at least five million people worldwide are affected by lupus and 16,000 new cases are reported each year.

    Hall stated that sharing her story is not for pity, but to encourage others who are living with lupus, and motivate them. (Link to Full Article

  • 21 Jan 2019 3:24 PM | Olga Browne (Administrator)

    EVEN as the country accounts for one of the highest rates of lupus worldwide, according to noted rheumatologist Dr Desiree Tulloch-Reid, Jamaican doctors are not equipped to properly diagnose the autoimmune disease because of the unavailability of a particular type of testing equipment on the island. (Click to Read More

  • 11 May 2016 9:56 AM | Olga Browne (Administrator)

    The Jamaica Gleaner, May 11, 2016 - In observance of World Lupus Day yesterday, the Lupus Foundation of Jamaica (LFJ) opened new offices. This is the first time that an office and learning centre of this nature will be made available to serve the needs of persons living with lupus, as well as the general public.

    World Lupus Day is about bringing further awareness to the plight of persons living with the disease, noted Dr Stacy Davis, president of the LFJ, "and we at LFJ also join the rest of the world with one voice in championing the cause for persons living with lupus".

    She continued, "There is no boundary to the impact of lupus. Lupus is a global health problem that affects people of all nationalities, races, ethnicities, genders and ages. Lupus can affect any part of the body in any way at any time, often with unpredictable and life-changing results. While lupus knows no boundaries, knowing all you can about lupus can help control its impact."

    Davis said the opening of LFJ's new centre was a significant milestone for persons living with lupus.

    "This was an important goal for the foundation that has been in gestation for more than 30 years. Now finally patients, their families and any one affected can come in and learn more about the disease and treatment options," she said.

    The Lupus Foundation of Jamaica office is located at 7 Barbados Avenue, New Kingston, and is open from 9 a.m. to 5 p.m. The Learning Centre is open from 10 a.m. to 12 noon and 1 p.m. to 4 p.m. Mondays to Fridays.

    WHAT IS LUPUS?

    Systemic lupus erythematosus, or simply lupus, is a disorder of the immune system and one of the least known major diseases. It is a chronic (lifelong) disorder of the immune system that results in abnormal inflammation of tissues almost anywhere in the body, including skin, joints, kidneys, blood, lungs, heart and brain.

    Common symptoms of lupus include fatigue (tiredness), rashes on the face and body, hair loss, joint pain or swelling of the legs. But lupus can be extremely variable in its severity and manifestations, and may produce different signs and symptoms in different persons; some persons are only mildly affected, while others can feel very ill or suffer life-threatening or disabling complications. Even for one person, symptoms may vary at different times in their lives, and there may be periods of increased or severe symptoms known as flares.

    Lupus most commonly first affects young women at the prime of their lives, 20s and 30s, when they may be starting careers or have young families; however, all ages, including children and men, can be affected as well.

    WHAT CAUSES LUPUS,

    AND CAN IT BE TREATED?

    The cause of lupus is not fully understood, but genes as well as environmental factors may both play a role. It is not cancer and it is not contagious. There is no definite way to avoid getting lupus or to predict whether you will get it, but by being aware you can recognise symptoms quickly and be diagnosed and treated early, which can make a big difference.

    Although there is no a cure for lupus, knowledge and understanding of the disease is greater than ever before; and treatments now exist that can be very effective in keeping the disease under control, allowing persons with lupus to live longer and better than ever. In addition, for someone who has lupus, good understanding of their condition, adequate support and expert care and monitoring go a long way to improve outcomes and quality of life.

    (Link to Original Article

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