A deadly ge­netic dis­or­der

Woman's Era - - Short Story -

What is Tha­lassemia? How is it caused?

Tha­lassemia is a deadly ge­netic dis­or­der and it is caused by de­fec­tive syn­the­sis of haemoglobin. It is an in­her­ited blood dis­ease em­anated by a mu­ta­tion to the gene that di­rects the pro­duc­tion of haemoglobin. Pa­tients with Tha­lassemia pro­duce ab­nor­mal haemoglobin that can­not trans­port enough oxy­gen to tis­sues.

What are the symp­toms of Tha­lassemia that can help early di­ag­no­sis? a) Pres­ence of less haemoglobin in the

blood. b) Hin­dered growth of baby and not in

pro­por­tion to age. c) Spleen gets en­larged caus­ing bulging tummy in com­par­i­son to the body.

Is it a cur­able dis­or­der? How is it treated? How can Tha­lassemia be pre­vented? Tha­lassemia is not a cur­able dis­or­der. The main­te­nance treat­ment of Tha­lassemia is based mainly on the in­fu­sion of fresh blood to the af­fected pa­tient along with ad­min­is­ter­ing of some iron chelat­ing agent.

It can very eas­ily be pre­vented by stop­ping the mar­riage be­tween two Tha­lassemia car­ri­ers as the risk of birth of Tha­lassemia- pos­i­tive baby oc­curs only when one Tha­lassemia car­rier ties knot with an­other Tha­lassemia car­rier.

Ac­cord­ing to statis­tics, every year ap­prox­i­mately 8000- 10000 kids are born Tha­lassemia pos­i­tive in In­dia. What role can gov­ern­ment play or is play­ing in the erad­i­ca­tion of this dis­ease?

The in­ci­dence of Tha­lassemia in In­dia is very high as ap­prox one in every twelve In­di­ans is ex­pected to be Tha­lassemia car­rier. We can sim­ply erad­i­cate the chances of this dis­ease through com­pul­sory pre- mar­riage blood test of would-be cou­ples and the Gov­ern­ment can play a big role in this area through leg­is­la­tion i.e., by the way of en­act­ing some ef­fec­tive Act as well as by in­creas­ing aware­ness not only in adults but also at schools or com­mu­nity lev­els. What is be­ing em­pha­sised is the spread of this cam­paign ei­ther through build­ing up of Tha­lassemia Car­rier De­tec­tion Cen­tre or by util­is­ing the ex­ist­ing in­fra­struc­ture up to the vil­lage/ block level by the gov­ern­ment, if need, by adopt­ing PPP model as it is be­ing suc­cess­fully implemented in the case of erad­i­ca­tion of Po­lio from the coun­try. If given sup­port of in­fra­struc­ture, ma­chin­ery and skilled man­power by the Gov­ern­ment, Serum group would be in­ter­ested in work­ing with the Gov­ern­ment.

You run SERUM Tha­lassemia Pre­ven­tion Fed­er­a­tion. What is your vi­sion to­wards the cause? How is your fed­er­a­tion ad­dress­ing the is­sue and how are you spread­ing the aware­ness in the coun­try?

Our solemn procla­ma­tion is to over­power and wipe out Tha­lassemia. So as not to hear a child say, “My eyes re­sem­bled my fa­ther, my smile bear re­sem­blance to my mother, and my sad in­her­i­tance is their deadly ge­netic dis­ease.” Through­out the year, Serum Tha­lassemia Pre­ven­tion Fed­er­a­tion or­gan­ised sev­eral pro­grammes like cul­tural, lit­er­ary, re­li­gious, sports and games, open- air work­shop, rally etc., but the ul­ti­mate and op­ti­mum goal of our or­ga­ni­za­tion is to reach out to as many peo­ple as pos­si­ble to spread our aware­ness cam­paign against Tha­lassemia. The aim of our Fed­er­a­tion is to reach to the last cor­ner of the so­ci­ety so as to per­co­late the mes­sage that ‘Pre­ven­tion’ is the only avail­able cure for this deadly dis­ease and for that we con­duct the Tha­lassemia car­rier de­tec­tion through HPLC at our Lab.

Most chil­dren who bear Tha­lassemia in In­dia are from the un­der­priv­i­leged strata of the so­ci­ety and, hence, are un­able to bear the mas­sive costs of treat­ment. How can we get past this ma­jor road­block in or­der to make In­dia Tha­lassemia- free?

It is a sad state­ment of fact that once some­one gets caught with Tha­lassemia there is no other al­ter­na­tive but to replace the af­fected haemoglobin through the in­fu­sion of fresh blood the sourc­ing of which, at times, pos­sesses prob­lem es­pe­cially to the needy but there is no other al­ter­na­tive avail­able for the treat­ment of Tha­lassemia. To make our coun­try get rid of this trou­ble for­ever the only pos­si­ble way is to harp on the pre­ven­tion again and again by way of only avoid­ing mar­riage be­tween adults of Tha­lassemia car­ri­ers.

What ser­vices SERUM Group of­fer?

Serum Group is in the field of Di­ag­nos­tic Lab­o­ra­tory for a pretty long time of eigh­teen years of­fer­ing state of the art ser­vices in patho­log­i­cal tests cov­er­ing all as­pects of hu­man diseases. Our stress is mainly laid on get­ting most mod­ern equip­ment along­side ex­pe­ri­enced and qual­i­fied hands with best avail­able reagents. The goal of the com­pany is to pro­vide af­ford­able di­ag­nos­tic ser­vices with un­ques - tion­able qual­ity.

In brief, we placed here statis­tics of Tha­lassemia car­rier de­tec­tion test by our Lab of more than 2.5 lakhs peo­ple in the last decade of which nearly 15% are found to be the car­rier. This alone speaks vol­ume about our ef­forts in pre­ven­tion of the spread of Tha­lassemia in the coun­try.

Tell us about the jour­ney of SERUM Group so far?

From a very hum­ble be­gin­ning about eigh­teen years back, SERUM Group is to­day rec­og­nized as one of the top brands in this coun­try who are in the busi­ness of di­ag­nos­tic ser­vices. We feel that our jour­ney has just be­gun and we have many miles to go be­fore we try to as­sess our achieve­ments. We are very much con­cerned about our CSR (Cor­po­rate So­cial Re­spon­si­bil­ity) and in­dulge in a lot of ac­tiv­i­ties to alleviate the con­di­tion of the down­trod­den of the so­ci­ety. Our pas­sion lies in en­sur­ing good health and pros­per­ity to all the sec­tions of the so­ci­ety.

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