Lupus study to start soon

A study on Lupus, to the tune of $80 000, is to be launched in Barbados by the end of October.

 

This is according to president of the Hope Foundation, Shelley Weir, who spoke after a Walk For Lupus yesterday.

This study would reveal information on possible environmental factors – such as exposure to silica – that may increase one’s chances of getting Lupus; identify the location in Barbados with the highest density of Lupus patients; and even pinpoint the first person in this island to get this disease.

 

The effort is a part of the Lupus Diary, which was launched earlier this year in May as the Hope Foundation marked its 25th anniversary. That organisation will use information gathered from stories submitted to the Diary from patients living with this condition, along with other persons who have been affected such as their family members, friends and work colleagues, said President Shelley Weir in an interview with the Barbados Advocate.

 

In fact, the stories from others who are affected is one of the unique things about this diary as they want to hear these stories as well and not just the stories of those persons who are living with this condition. According to Weir, these persons “also have a story to tell”.

 

The President stated that family members and friends, especially those who have a role to play in caring for Lupus patients, often have several conflicting issues to deal with amongst themselves. One of these issues includes finding the right balance while caring for them as you do not want to be too overbearing nor do you want to be too inattentive.

“One of the challenges that persons have is understanding things from the viewpoint of a Lupus patient and how best they can help them without being too stifling or too neglectful. That is the key, finding that balance.”

 

Weir recounted an example of a mother whose daughter has Lupus speaking about her heartbreaking story of the time her child first got diagnosed to how she is coping with it and how disheartening it is to see your child not only deteriorate, but also experience the feeling of helplessness yourself as you watch your child go through this condition, which is not as easy thing to do.

 

In addition to the stories that have been submitted, the Foundation has also been carrying out one-on-one interviews and in the next two weeks, they will be having focus groups, all in an effort to gather more information for their Lupus Diary study.

 

The one-on-one interviews will be conducted in a medium that is the most convenient for the person involved, whether it be face-to-face or via the telephone, while the focus groups would be divided into separate groups such as Lupus patients, mothers of persons living with Lupus, siblings of Lupus patients, work colleagues of Lupus patients and physicians charged with the responsibility of caring for Lupus patients.

 

The $80 000 price tag for the study includes everything from gathering the information to analysing the data when it comes in to the publication and release of the study later on this year, stated the President. (PJT)