Resh­ma Ra­goonath

Lu­pus is of­ten de­scribed as a "mys­tery ill­ness" that is as un­pre­dictable as it is dif­fi­cult to di­ag­nose. It has al­so been de­scribed as the "great im­i­ta­tor" since many of the symp­toms of lu­pus mim­ics mark­ers for oth­er dis­eases. This pos­es a chal­lenge for doc­tors to ac­cu­rate­ly di­ag­nose lu­pus. Many have heard the name lu­pus be­fore but do not quite un­der­stand what it is all about. The Lu­pus Foun­da­tion of Amer­i­ca, on its site–http://www.lu­pus.org, states that "Lu­pus is a chron­ic, au­toim­mune dis­ease that can dam­age any part of the body (skin, joints, and/or or­gans in­side the body.)"

Sys­temic lu­pus ery­the­mato­sus is the most com­mon form of the dis­ease and af­fects more women than men.The month of May is ded­i­cat­ed to lu­pus aware­ness and last Fri­day, mil­lions around the world host­ed var­i­ous events to mark, World Lu­pus Day.On Sat­ur­day, the Na­tal­ie Af­fon­so Lu­pus Foun­da­tion will host a Lu­pus Aware­ness Walk at the Queen's Park Sa­van­nah at 4 pm. Reg­is­tra­tion is cur­rent­ly on­go­ing.Foun­da­tion chair­man Joel Bas­an­ta said the walk is aimed at high­light­ing the dis­ease, since lu­pus is still mis­un­der­stood in T&T."There is still a lot of in­for­ma­tion that has to be shared and un­der­stood about lu­pus," Bas­an­ta said.

He ex­plained that the foun­da­tion was formed in mem­o­ry of his friend Na­tal­ie who passed away on No­vem­ber 24, 2011 af­ter she suc­cumbed to com­pli­ca­tions aris­ing from lu­puswhich she had been bat­tling for 14 years."Lit­tle is known about lu­pus. There is no cure and we be­lieve that there is a greater need for aware­ness, for in­for­ma­tion to get out there," Bas­an­ta said. "We want to pro­vide enough in­for­ma­tion and sup­port from the get go, so if they (pa­tients) have symp­toms they will know what to do and what is the next step."

He said the foun­da­tion wants peo­ple to have a greater un­der­stand­ing and ap­pre­ci­a­tion for the dis­ease and for "it to be less taboo in so­ci­ety es­pe­cial­ly with peo­ple who are di­ag­nosed."Bas­an­ta hopes for a day when Lu­pus is as recog­nised as can­cer and that recog­ni­tion, he said, be­gan with ed­u­cat­ing and sen­si­tis­ing the pub­lic about Lu­pus.He said Lu­pus is eas­i­ly mis­di­ag­nosed and of­ten peo­ple with the dis­ease may not even know that they have it."We are still a de­vel­op­ing coun­try. We have a lot of coun­try and rur­al ar­eas and peo­ple may not know about this dis­ease. "They may be ex­pe­ri­enc­ing chron­ic fa­tigue and think it is di­a­betes, which is a fea­ture of di­a­betes. But it may be Lu­pus."

In fact Bas­an­ta be­lieves "there are a lot of peo­ple in T&T who may have lu­pus and they do not know or their doc­tor may not know."He said on­ly a rheuma­tol­o­gist–of which there are very few in T&T–could di­ag­nose Lu­pus.Bas­an­ta said T&T "is not ad­e­quate­ly equipped to deal with Lu­pus.""We need to have rheuma­tol­o­gists, kid­ney ex­perts. We need to have more tech­nol­o­gy and equip­ment. We need more dial­y­sis ma­chines, be­cause lu­pus af­fects the kid­neys, and the tech­ni­cians to op­er­ate these ma­chines. Na­tal­ie died from re­nal fail­ure."He said Af­fon­so was in a pri­vate hos­pi­tal that did not have 24-hour/sev­en-day ac­cess to a dial­y­sis ma­chine.Bas­an­ta said the foun­da­tion want­ed to build an of­fi­cial reg­istry for Lu­pus pa­tients with­in T&T which would feed in­to the Min­istry of Health to pro­vide for re­search and prop­er di­ag­no­sis.

He said apart from the phys­i­cal chal­lenges that came with Lu­pus many pa­tients were of­ten ridiculed be­cause of their con­di­tion: "It is very im­por­tant for some­one with lu­pus to have a good sup­port sys­tem."The foun­da­tion can be reached via its Face­book page, https://www.face­book.com/Na­tal­ieAf­fon­soLu­pus­Foun­da­tion.

What is lu­pus

Lu­pus or sys­temic lu­pus ery­the­mato­sus is an in­cur­able dis­ease that in­volves the im­mune sys­tem–the body's in­ter­nal de­fence sys­tem. The cause of Lu­pus is un­known. It is not con­ta­gious.The Amer­i­can Col­lege of Rheuma­tol­ogy, onn its Web site-http://www.rheuma­tol­ogy.org, ex­plains that "when healthy, it (the im­mune sys­tem) pro­tects the body by mak­ing an­ti­bod­ies (blood pro­teins) that at­tack for­eign germs and can­cers.With Lu­pus, the im­mune sys­tem mis­fires. In­stead of pro­duc­ing pro­tec­tive an­ti­bod­ies, an au­toim­mune dis­ease be­gins and makes "au­toan­ti­bod­ies," which at­tack the pa­tient's own tis­sues."Es­sen­tial­ly, the an­ti­bod­ies which are pro­duced to fight in­fec­tions and bac­te­ria at­tacks healthy tis­sue in­stead in­clud­ing ma­jor or­gans.

Symp­toms

The Amer­i­can Col­lege of Rheuma­tol­ogy has list­ed the fol­low­ing symp­toms and oth­er mea­sures doc­tors can use to de­cide if a pa­tient with symp­toms has lu­pus. If doc­tors find at least four of these prob­lems, and no oth­er rea­son for them, you may have lu­pus:

1) Rash­es

�2 but­ter­fly-shaped rash over the cheeks–re­ferred to as malar rash,

�2 red rash with raised round or oval patch­es–known as dis­coid rash

�2 rash on skin ex­posed to the sun

2) Mouth sores sores in the mouth or nose last­ing from a few days to more than a month

3) Arthri­tis ten­der­ness and swelling last­ing for a few weeks in two or more joints

4) Lung or heart in­flam­ma­tion swelling of the tis­sue lin­ing the lungs (re­ferred to as pleurisy or pleu­rit­ic) or the heart (peri­cardi­tis), which can cause chest pain when breath­ing deeply

5) Kid­ney prob­lem blood or pro­tein in the urine, or poor kid­ney func­tion

6) Neu­ro­log­ic prob­lem

seizures, strokes or psy­chosis

7) Ab­nor­mal blood tests

�2 low blood cell counts: ane­mia, low white blood cells or low platelets

�2 pos­i­tive an­ti­nu­clear an­ti­body: re­ferred to as ANA and present in near­ly all pa­tients with lu­pus

�2 an­ti­bod­ies that show an im­mune sys­tem prob­lem: an­ti-dou­ble-strand DNA (called an­ti-ds­D­NA), an­ti-Smith (re­ferred to as an­ti-Sm) or an­tiphos­pho­lipid an­ti­bod­ies, or a false-pos­i­tive blood test for syphilis

Peo­ple with Lu­pus of­ten have fea­tures that are not spe­cif­ic to the dis­ease such as un­ex­plained fever, fa­tigue, weight loss, blood clots and hair loss in spots or around the hair­line.