The Lupus Foundation of Jamaica

Though maybe just a little dot on the map of the world, the little island of Jamaica, much like many other great nations of the world, is trying to raise the level of awareness nationally, as it relates to Lupus.

The driver or the lupus awareness vehicle in Jamaica is the Lupus Foundation of Jamaica (LFJ). This foundation has been in existence since 1984 but went dormant for a while. However, since 1995, it has awakened, and has been active up until this present day. The LFJ does not have a definite location as yet. However, this in no way hinders it from accomplishing its objectives or from hosting its monthly meetings which are held at the Girl Guides Association of Jamaica Headquarters at 2 Waterloo Road, Kingston 10.

Meetings are held usually, on the last Thursday of the month and in these meetings, issues that affect Lupus patients are addressed. These meetings are geared towards educating the patients, as well as providing a social setting for them. Along with providing information through presentations, patients are also provided with lupus magazines which they should return after reading so that they can be passed around to all other patients.

Meetings begin with a devotion, after which visitors are welcomed and asked to introduce themselves. This is followed by the presentation of a specific issue. Examples of previous topics are the anti-inflammatory diet, lupus and weight loss and lupus and the heart. After the presentation, there is a question and answer segment which concludes the evenings proceedings. This is usually the beginning of the social bonding where persons get to know and interact with other Lupies and doctors.

The Jamaican Lupies have their very own Martin Luther King Jr., who has been driven, not merely by his profession as a doctor, but by a passion, a deep concern and most of all, a dream for Lupus patients. This person is Dr. Karel De Ceulaer, a Consultant Rheumatologist in the Department of Medicine at the University Hospital of the West Indies. The foundation’s success is credited to him and the hard working board and executive members, as well as the members of the LFJ.

Dr. De Ceulaer is the president of the LFJ, who by birth, is a Belgian and whom I have had the privilege to interview. I went to the University Hospital of the West Indies with my notepad and pen in hand, ready to be all professional. However, when the interview started, it became more of a comfortable conversation. When I asked about the drive behind being the president of the foundation, the response that followed was:

“Lupus is a disease of the whole body and there is much more to Lupus than just taking medication. I’ve recognised that it puts limitations on life so there is a lot of adopting and adjusting for the Lupus patient. The diet, the exercise, the constant fatigue… Also, the medical approach alone does not necessarily cover the educational aspect. I have seen it many times: the patients with Lupus who are knowledgeable and who understand the disease do a lot better than those who don’t."

The interview went on to zero in on the duties of the foundation and its main objectives. The primary objective is to spread lupus awareness and educate patients and this is achieved by providing informed speakers to make a presentation at monthly meetings, on various issues that affect lupus patients. The LFJ also helps to provide employment for lupus patients who have lost their jobs because of lupus. This is done through the help of a social worker. Awareness is brought about also, through the mediums such as schools, radio and television and an annual church service, lupus walk and symposium.

There is no cost attached for attending meetings. However, each member is required to pay a fee of JA$500.00 (the equivalent of US$5.95) for a Lupus card which is valid for one year. This is a small price to pay for the benefits that are derived from having this card. With the card, Lupus patients are able to purchase medications at a discounted cost at thirteen pharmacies locally and to receive a discount at all central medical labs and the Sunshine Dialysis Lab.

The interview ended with Dr. De Ceulaer saying that the foundation is indeed trying its best to reach the patients with lupus and those who it impacts but admits too, that there is much more has to be done, and much more that is being worked on.

© Shoyea-Gaye Grant
Jamaica,
West Indies.

The Lupus Foundation Jamaica
Voice mail: 1876-803-0082
Email: lupus_foundationja@yahoo.com


First published in The Lupus Magazine