Hope Foundation pressing ahead with its Lupus Diary initiative

Barbados has the second highest reported incidence of Lupus in the world, second only to Spain.

 

President of The Hope Foundation, Shelley Weir acknowledged the above recently. Given that the day-to-day living with this disease is challenging, not only for patients, but all those affected, whether parents, spouses and partners, siblings, children, friends and colleagues, she said that this story needs to be told, to show similarities in experiences, unique challenges and to offer a general understanding of the impact of Lupus. 

 

As such, the Foundation is pressing ahead with its Lupus Diary initiative, which was launched earlier this year, to spread the word about this autoimmune condition that affects primarily women, in their most productive and reproductive years.

 

“The Lupus Diary aims to tell the story of lupus in Barbados as a pilot and then, once we get the Barbados story, we will then seek to go a little bit further than that,” Weir told this newspaper.

 

“What makes this diary different, is that the literature would usually reflect the accounts of the patient or from (a medical perspective), the diagnosis and treatment, but this Diary really seeks to get the perspective from a person affected by Lupus. So we want to hear how everybody feels about Lupus, having Lupus and so on, because we do say that Lupus can affect a whole family,” Weir added.

 

Pointing out that she interacts with many young adults who lost their mothers to the disease whilst they were still very young, Weir noted that it would be interesting to hear their stories as well, to better understand their ordeal. There are a number of husbands as well, who often indicate that they are unsure how to cope fully when their wives are at home battling the disease and they still have to function in their social networks.

 

Weir indicated that the Foundation has held a number of focus groups to aid various categories of persons touched by Lupus, including the patients themselves, their parents and children and the focus next will be on partners and spouses.

 

With the Lupus Diary however, Weir says the aim is to be able to make recommendations at the end, on how persons can better understand and cope with Lupus. One aspect of the Diary will contribute to academia, whilst the other aspect will appeal more to lay persons. Persons can take the Lupus Diary survey online at www.hope foundbarbados.org