THE OFFICE & LEARNING CENTRE
MEMBERSHIP BENEFITS
The Foundation acquired an office at 7 Barbados Avenue in New Kingston, which became functional April 2016. This was achieved by the generous endowment of funds from a Rheumatologist/Researcher working in the USA, in addition to contributions from corporate entities and individuals.
The Foundation revived the pharmacy discount programme to help defray the financial strain on members. Our social worker continued to offer support to members. In addition, counselling services started in September with Rev. Neilson Waithe, minister of religion, professional counsellor and author. He assists in providing social, psychological and emotional support to patients and their families.
A few members were assisted financially while we continued to give moral support to families as they dealt with the Dr Karel De Ceulear Consultant Rheumatologist and Past President, cuts the ribbon to challenges of officially open the LFJ office with the assistance of Rosemarie Nethersole, Founding Member. . acute illnesses, Looking on are Denise Brown, Vice President Membership. In the background are Dr Keisha death and Maloney, then1st Vice President, Patrice Whitely Assistant Secretary and Hugh Douse Emcee difficulty in for the event. obtaining needed health care. The Foundation employed its first staff member, an Office Coordinator, Miss Leonie Jackson. Office hours are 9 a.m. to 5 p.m. Monday – Friday. The official opening ceremony of the Office & Learning Centre was on May 10, 2016, coinciding with World Lupus Day. In attendance were founding members, past executive members, sponsors and lupus patients. A live broadcast was done by Nationwide. The presence of the Office and Learning Centre facilitated walk-ins who come to learn more about lupus, patients seeking assistance, persons making donations and the registering of members. We are now exploring ways and means to generate sustainable income to help off-set costs. We are also seeking volunteers to help with updating and managing our social media sites.
The support group meetings continued to be held on the 3rd Thursday of every other month at 6:00 p.m. on the grounds of Girl Guides Headquarters. Some of the topics we explored were: • Lupus and the Kidneys • Staying Healthy with Lupus • Systemic Lupus and the Eye • Your Finances & Lupus
held in 2016 with some of the Foundation’s doctors. Workshops were also held at the Office with lupus members. This was well supported. However, the response to the pilot project that followed was disappointing with about 10% of the intended participants responding. We continue to actively try to make this a reality. Other research activities were studies on: cardiovascular disease in lupus patients and preliminary data on Lupus Auto-antibodies & Clinical Outcomes in Jamaican SLE patients. SYMPOSIUM The 2016 Symposium was held Sunday October 23, under the theme “Achieving Wellness with Lupus” at the University of the West Indies Medical Complex. A total of six presenters discussed various topics including: How to Diagnose Lupus – The New ACR/SLICC diagnostic criteria for Lupus; Lupus and the Family; Nutrition and Lupus; Cardiovascular Health and Lupus: The Jamaica Data; Exercise and Rehabilitation with Lupus; and Living on a Tight Budget with Lupus. FUND-RAISING Fund-raising activities for the year were: Benefit performance of the play ‘Guilt Trip’, Party for a Purpose organized by POSH, Wine, Fashion, Art Cocktail party organized by Jamaica Medical Foundation. OUTREACH, ADVOCACY & EDUCATIONAL EFFORTS The Foundation did a media blitz with the customary radio & TV interviews and also participated in an Editor’s forum with the Gleaner. This was done for the lupus awareness month, October 2015.
TELEMEDICINE PROJECT & OTHER RESEARCH AND ACADEMIC WORK Major efforts are underway to introduce telemedicine in Jamaica thereby improving accessibility to care especially for rural patients with lupus. Under the leadership of Dr Michel Walravens a number of meetings were A section of the audience at the Sypmposium held at the UWI Medical Sciences Teaching Complex
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Further psychological impact is seen with significant decline in cognitive function, changes in self identity and self esteem as well as concerns for the future including financial security and reduces functionality. MOVING FORWARD - Supportive family therapy can provide a voice for each family member; therapy for anxiety and depression as well as coping and problem solving skills. Both the patient and the family must understand they are allowed to establish the “new normal”. It is important to identify the positive outcomes within the family unit as well as seek support outside of the family with persons who have shared experiences. In spite of the challenges, it is important to remember that there is help to be had and support can help to overcome the issues. Attendees registering for the Symposium
A petition has been initiated to get lupus added on the National Health Fund (NHF) covered illnesses. This was followed by discussions with the Foundation and NHF in an effort to facilitate this milestone. Though a final decision has not been reached, the process is being looked at and we anticipate a favourable response. Discussions are underway to rejuvenate the Mandeville chapter of the Foundation. We participated in the Shortwood Teachers’ College’s Annual Fair held in November and a lupus patient also participated in the Ms Law 2015 Lupus Awareness Seminar. Other presentations were made to organizations and also a number of media interviews were done with various media houses.
An excerpt from the 2016 Lupus Symposium Presenter: Dr K. Richards - Clinical Psychologist
“Lupus is the journey the whole family must go on but it doesn’t have to be the bus”. The psychological challenges of lupus may vary depending on what stage of the illness you may be experiencing. In the pre-diagnosis stage the invisible nature of the illness (the person may not Page 3
look obviously ill) may lead to disbelief by family and sometimes even by clinicians. Additionally, a lack of understanding of their illness may lead the patient to worry and to have catastrophic thinking. At the time of diagnosis lupus patients may feel relief by finally knowing what is wrong with them as well as vindicated that their symptoms have been validated. Others may be in a state of shock. Ignorance leads to stigmatisation and myths. Therefore, to prevent feeling shame the patient and the family both require clear channels of communication on symptoms, treatments and prognosis. The introduction of a chronic illness such as lupus to the family may lead to role disturbance. Necessary changes to family planning and reproductive desires may lead to guilt and worry. The significant role of the woman as caregiver to children and the elderly may be impacted negatively and may result in other family members having to take up her responsibilities. Also, the unpredictability of the illness results in disruptions in routines and makes long-term planning difficult and result in disappointment. Relationships may suffer from a loss of intimacy and a feeling of a loss of attractiveness; also the ill member of the family may no longer want to participate in joint interests and social activities with his/ her spouse. There may be a loss of the ability to play, physically care for, nurture and be emotionally available for children. In extreme cases isolation of the patient may occur.
• Lupus is a chronic autoimmune disease which means an individual’s immune system acts on their own health tissues resulting in damage to different parts of their body. • At least 5 million people worldwide have lupus. • No two cases of lupus are alike. • Some people with lupus don’t look sick though they are quite ill • Common symptoms include prolonged joint pain, skin rashes, overwhelming fatigue and fevers. • Lupus can affect any organ or tissue, from the skin or joints to the heart or kidneys. Two leading causes of serious illness and death from lupus are kidney disease and heart disease. • Lupus usually develops between ages 15 and 44 and it lasts a lifetime. • Lupus can affect anyone, but 90 percent of the people living with lupus are females. Men and children also develop lupus. • While people of all races and ethnicities can develop lupus, lupus occurs two to three times more frequently among Blacks, Asians and Hispanics than among Caucasians.
Excuse me
IMPORTANT FACTS ABOUT LUPUS (Cont’d from pg. 3)
By: Emily Dixon
Excuse me while I confess That it’s not always easy To face this life with a chronic disease An unpredictable and challenging one as lupus Excuse me while I sometimes break down Because my hair refuses to grow back My skin scaly and scar-covered Attempts to steal my beauty
• While the causes of lupus are unknown, researchers believe hormones, genetics and environmental factors are involved — more research is needed to better understand the role of these factors as well as other yet unidentified contributors in persons with lupus. • Lupus can be difficult to diagnose. There is NO single blood test to diagnose lupus, and its symptoms mimic those of other diseases, vary in intensity and can come and go over time. More than half of those afflicted with lupus suffered at least four years, and saw three or more doctors before obtaining a correct diagnosis of lupus. • Lupus can be expensive to live with and treat. The average annual direct and indirect costs incurred by a person with lupus can exceed the cost per patient of those living with heart disease, bipolar disorder, chronic obstructive pulmonary disease, diabetes, hypertension and asthma.
Excuse me while I feel discouraged That no treatment has ever really worked I have never claimed remission And I’m not yet free of this burden Excuse me while I speak for those who can’t and won’t Who’s struggles are far greater And they feel like giving up Because life has thrown this curve-ball And with everyday they fight To make it seem like they’re strong enough Deep down knowing that the pain and the strain is just so much
• Early diagnosis is crucial to preventing long-term consequences of the disease. If you notice signs of symptoms of lupus, be sure to see your doctor/rheumatologist and ask questions.
But.. Excuse me while I give thanks For every soul touched by this disease Who smile to cover tears and hurt and pain Because it means their lives have not been claimed Who recognize the lessons that have come And the blessing of others who support Who have lived, laughed, loved and been loved... In spite of a hard life In spite of a life with lupus. Thanks for showing an interest in receiving the Lupus Foundation of Jamaica’s newsletter. It’s a good way to stay Lupus Aware on developments in Jamaica and beyond. Once you have submitted your email address to the Foundation you will receive this newsletter. If you do not wish to recieve in the future do let us know.
Lupus Foundation of Jamaica
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7 Barbados Avenue, Kingston 5 Telephone: (876) 754-8458 Email: info@lupusfoundationjamaica.org Website: lupusfoundationjamaica.org