inside this issue sankalp’s bone marrow transplant ...€¦ · sankalp’s bone marrow transplant...
TRANSCRIPT
Volume 5 Issue 9 September 2015
Inside this issue
Emergency Wing Team Report - 2014-15 - Page 4
Donor Counseling - the long
road ahead - Page 7
News and Updates from
August 2015 - Page 9
Onam: the color of god’s own
country - Page 12
Workshop on thalassemia
prevention, management and
cure - Page 14
We are offering HLA Typing-
Page 15
The unit was na ur ted on xpressed de ight t t ei ug a e l tha h
the 27 of Aug t by faci it s l oki to cater to th us 2015 l y i o ng
D Va anade , Di ector of patie fro all o er r m va r nts m v the
Health and F mil We fa e state nd hope tha the a n a y l r a d t p i
ervice , overn e t of a ur en o thalas e i S s Gi m n nd b d f s m a
arnataka. The e ent was w ll be wipe ut fo e e a K v i d o r s v r l
a t e n d e d e v a l chi d en.t b y s e r l r
d i g n i t i e s t r e a t n ga r i
thalassem a p ti nts fro h 4-bed unit is ne f thei a e m T e o o
a ro s coun y. P r , o cente s in the untrc s the tr a ents tw r co y
f ilies o thalassemia that ha n exc usi e f cus am f s a l v o
affected hildre er als o tha as e i . T unit s c n w e o n l s m a he i
pre n S eaking at the b e g s e t u p w hse t. p i n i t
cca on, Dr Va a d va ph lanthr pic on ributi nso si m na e i o c t o
g i hted the e d r such fro s v r l individuals and hi hl g n e fo m e e a
c ntre that offer quality c r or a za ons Dr aw ence e s a e g ni ti . L r
and yet be affo d b e. H ul om C e2Childrer a l e Fa kner fr ur n
Sankalp’s Bone Marrow Transplant unit is now a reality
A new hope, a new silver lining has surfaced for little children suffering from the pain and burden of thalassemia. A new Bone Marrow Transplant unit (BMT) with an exclusive focus towards treating thalassemia children has been jointly established by Sankalp India Foundation, Cure2Children and People Tree Hospitals at Bengaluru. This unit is the one of the two centers in the country and first of its kind in South India, that has an exclusive focus on thalassemia and is setup on a Not For Profit basis.
Sankalp Patrika Volume 5 Issue 9 Page 2 Sept 2015
“Try to be a rainbow in someone's cloud.” - Maya Angelou
Ital is the c nsul t p y i i n boar .y o tan h s c an o d
C e2C ildren, e w enc sur h head d by Dr La r e i
spe rh din a a sem a ca a d a ea g th l s i re n
manag ment n eve al ar of E o e ande i s r p ts ur p
As a. Be ng edi ri nc l g he has i i a p at c o o o ist,
t en sp cial ocus on alass mia an has ak e f th e d
verse se r u ce sf ransp ants o en ve al s c s ul t l ato ld ike thi enter be o J I w u l s c to c me C
sociat d ce tr s er the orld H as e n e all ov w . ecc edi e , n e al th pro s s ar A r t d he c l e ce se e
“every chi d, suf n f msays l feri g ro ac o d ng y be ng et and fo lo ed he dc r i l i s l w ’, ad s.
hala se i t e an af or ab e t s m a, mus g t f d l and
eli le cure”. Und r his ab e gu dan e, t r ab e l i c heEve y o e r w ransp ntat n don atr B n Mar o t la io e
te m Peo le T e Ho it by ra at p r e sp als led D th ce r is g y sub i ize . R gular o tis nt e hi hl s d d e c s
C t G nige i l e ed p o i e Li e Ahe an i r is al g ar u t G v f o B ne Mar o tr lant io e w e e sf o r w ansp at n lse h r i
B t e hance to se r chil r n wh ee t r C ve al d e o ar g all ove ove 15 lak s Ho eveenr y r and ab h . w r,
q d up or tran p ant .ueue f s l st s jo nt ve ur s goi o b in o n hehi i nt e i ng t r g d w t
o t t aro nd 8 5Lak s 10 L hs o c s o u . h to ak f r“This i ent e a c ng omerati n o jo nt v ur is o l o f
ed c il r n. o k w e g is is ne y h d e To ur no l d e tht r e organi ati n , w eli e i h e z o s ho b ev n
o ng t e t l wes os or o Mar o g i o b he o t c t f B ne r we ive i g q ity care ach d l r ng hi h ual to e &
r plant io in he c un y. S alp is T ans at n t o tr ankve yo . e ar aki ve y asur e r ne W e t ng e r me e to
ak g c e o e f nancial socio e o omi t in ar f th i , - c n ce u e t , s sid z d o t does n t mak s r hat ub i e c s o
as e and p e t an e nt as ec s at p cts ati n m ag me p t e a p r o i e d c r e ” m n c o m m s a s a y s
the nt e ank p has o g d e ations ip ce r . S al f r e r l h sr.Chand as k C kk iyap a, C O D r e ar hi amun p E
w th eve al ar e s t be ab e to s up t i s r p tn r o l et heand enio J in p ac me t Sur e n, S r o t Re l e n g o
un a mini cost d y t o fer qu ityit t mal an e f al P o le r e spi als. ear ’ ime wee p T e Ho t ‘In 3 y s t
care. “ o chil i h alass mi s ou di ,N d w t th e a h ld e
Sankalp Patrika Volume 5 Issue 9 Page 3 Sept 2015
"We know what we are, but know not what we may be." - William Shakespeare
i er be a o a fu ds o a ili ies,e th c use f l ck n r f c t
e ir o e have lr ady beenTh f st set f pati nts a e t at’ u i io . u is w rh s o r m ss n O r aim to o k
dm tt n a e n t eir ea m t urs .a i ed a d r o h tr t en co e t wa d e ect e e en o , ma age to r s ff iv pr v ti n n men
i g n tha v r t e ne nIt is be n plan ed t o e h xt o e a d r lass mia a h s n cure fo tha e nd t ereby ea e
y r o e h 2 c il will av beenea m r t an 0 h dren h e h pain n ff n o childr ” says t e a d su eri g f en
c r d. t s also e ed t a i du o ru e I i xpect h t n e c u se a i h ajat kal diL l t & R from San p In a
o ti e t t f o e er o h r cen r sf m pa ien s r m s v al t e t e oun t n. A po r ul a ell- g d F da io we f nd w desi ne
i h co t may b efitt by hn t e un ry be en ed t e eb based app ic t n BMT l s, de elo d w l a io , P u v pe
s e o ered by h t eervic s ff t e cen r .by San l t c n l g n J gr i ka p’s e h o o y part er – a it
I no ati n s bein s d as t e pla f r n v o s i g u e h t o m
w er t t’ da ly t e nt uti es r h e pa ien s i r atme ro n a e
tra ked by ll o cer ed.c a c n n
Recently, one of the three little ones stepped out and took the first steps out of
our BMT unit. The other two children are also packing their bags. Our dream of
offering safe and quality oriented transplant to any and every child who suffers from
thalassemia has started taking shape.
Sankalp Patrika Volume 5 Issue 9 Page 4 Sept 2015
"The world is full of magical things patiently waiting for our wits to grow sharper." -
Bertrand Russell
The ye b g wi m rg r of Proj c D ha Apart fro c ls he l n g tti h n l d ar e an th e e e t is m al to lp i e e ng a d e ,
and r n y W n tw t m he o r oo hing hat pene inc u Eme ge c i g, the o ea s t the g d t s t hap d l de
i cli e o s m k n l od ac e s l e ting an e e p oy e ov r 12 h rsn n d t ward a i g b o c s ib e g t xtra m l e to c e ou
and a lable to the nee y. It l that t f c l a y. T c nolog remai e the vai d was fe t i o al s d il e h y n d
wou d e lo t al y as e f the o i g s bac b e i runn ng the he p nel b gis ic l e i r i tw , b g e t k on n i l li .
o h r i pa ate y ercei ed t a ne ly i g te M gate y was w llt e w se se r l p v e ms, The w nte ra d S S wa e
o e n o s o re e ve b th b c le n the tew rk d i c he i n. c i d o y al rs a d am.
h lpli e S a onT e He n itu ti
e lpli s e ie ed to e rit alTh he ne i b l v b c ic to
S n p rog s s an o ani ati n. a kal ’s p re s a rg s o
R ni the lpli wi ut ro l m un ng he ne tho p b e s
mea s hat the as c urp s o n t b i p o e f the
o ani ati n e f l ll d – h l ing p o l rg s o g ts u fi e e p e p e
wi b o d. o thi e nt am i th l o T s xte the te d d
p rfo . But, whe t om s to s mp f i g e rm n i c e i li y n
l od s arc fo the ne d l e t t amb o e h r e y at arg , he e
i me t xp c ion it had s t fod d not e the e e tat s e r
ts lf l ug he umb r o c ls c mingi e . A tho h t n e f al o
t l li d op e ov r the y ar bto he he p ne r p d e e , ut
o su e , the hel l ’s e ag me tc me mm r p ine ng e n
pic e li e nev r e rek d up k e b fo .
The am o le to ti l rovide te was als ab ac ve y p
kil dev lop e for R s o e Ce er s l e m nt e p ns nt
e uti t hand e ore co ple bloo Ex c ve o l m m x d
q s . l ug he hang n mp ye re ue ts A tho h t c i g e lo e
it o e ul d n it e of he kn e g s uati n r s te i l tl t owl d e
n fe cu minate re k.tra s r l into al wor
A ng he ot s oo t i s the i g smo t n o g d h ng , b g e t
w rry was d p i ave ag num e oo a ro n the r e b r f
c ls w i h e c e p ine A la k oal h c r a h d the hel l . c f
ini ati e fro the t am p h u theti v m e to atc p
p o l th p oa ti a are e sr b em wi r c ve w n s
ca p ig wa fe t. 7% l al w rem a ns s l 6 of al c ls e
Emergency Wing Team Report - 2014-15
Sankalp Patrika Volume 5 Issue 9 Page 5 Sept 2015
"Health is the greatest gift, contentment the greatest wealth, faithfulness the best
relationship." - Buddha
f o an al r , wh c is a i eable in re e d cume tat o d l k f acti S P r m B g o e i h s z c as o n i n, an ac o ve D
f o l s y ’ 61%. Th n ed o th data a e. Wh le ll emer ency bloo r m a t ear s e e f r e b s i a g d
hel li e re ey nd he c ty in a b g way r ques s w re c e ed o on ime, he nee p n ach b o t i i e t e at r t t t d
was f l . t r ng proc sse and t ain more vo unt er e t o b i e s r l e s
was elt T e team pl s t ake t is in f . h an o t h up
Due o fre uent emp oye change , t e t e up om ng yet q l e s h h c i ar.
requency of ai y t cks u d te also fellf d l s o p a
i n fi an ly he roject to th blo d omb y Blo Group Ne works g i c t . T p make e o B a od t
e p ine a si gl o nt f ontact o al h l l n e p i o c f r l
Sa al t vities al o suf ered d e to lack o nk p ac i s f u f
a t eamli pproach d chan in RCEs. s r ned a an g g
Whi e t e co e ask o m nag ng he e p ine l h r t f a i t h l l
and ha l ng call one, t e team plans nd i s was d h
to fi t e e l o holes n t e p om ng yex h s o p i h u c i ar.
Ha dl g Em rgen i sn in e c e
E rgency ng onti ued o t e b o dme Wi c n t ak l o
e u sts, ight summer h r ag s, bui d k llr q e f s o t e l s i
d o enti f r tra usion medi ne an p t al o nsf ci
es a ch d buil network for Bombay r e r an d
B ood r up.l G o n t ta , 3 blood r ques s w re ec v f rI o l 8 e t e r ei ed o
the rar b o d group from a ross he e l o c t
What m k s he team po erful s a a e t w i c un ry he e was s c ess ul t is ar o t . T t am u c f h ye
f c ional h l l ne, a team of p rience un t e p i ex e d in co labor tin w th o her o ganisat on to l a g i t r i s
vol nteers who p s ss a orou h u o se th g use ombay blood grou site f r re uest and B p o q
un erst di g of t ansfu i n dicin , it d an n r s o me e s d n r man eme t and also a in it ne o o ag n m k g a o
cr dib li w th don r an b ood bank e i ty i o s d l s stop i format o n e and d s u sion n i n ce t r i c s
especial y in a es o Bo ba blood g o pl c s f m y r u forum for Bo a bl o grou ndiv d als. mb y o d p i i u
r quirements v labilit of ba kup e , a ai y c T r an zati ns whi h artner d in lud he o g i o c p e c e
olu e s who can pe ann a, 24*7v nt er s ak K ad mba ’ Thi k Fo d io and eve al Mu i s n un at n s r
vai ab li o at eas o olu ee s r ng a l i ty f l t ne v nt r, t o l o b nk from Kar ataka. Th ear alsob o d a s n e y
at ase o B mb y l o grou ev n rom d ab f r o a b o d p e f i nes ed scienti i p er on mb yw t s a f c ap Bo a
s a l i ies, vailab li l o t ck d a m l c t a i ty b o d s o at l o group by the Emer ency Wi g ett ngb o d g n g i
pu l c ly and p atelets don r re i t y.b i al , l o s g s r ac epted in Blo d tra usion jo rn .c o nsf u al
The e h w er, w tness d sho tage o t am, o ev i e a r f Whi e he eq t we e ag d, th re e l t r ues s r man e e ar
vo unt er , in u f c e t m et ng , l k of l e s s f i i n e i s ac se r other r aso s w y Bombay Blood ve al e n h
Sankalp Patrika Volume 5 Issue 9 Page 6 Sept 2015
"Clouds come floating into my life, no longer to carry rain or usher storm, but to
add color to my sunset sky." - Rabindranath Tagore
�N�u�m�e �o �s �B �m�b �y �l �o � �G�r �u�p� �d �n�o�r�s� � �r �u � �o �a � �B �o �d �o �o�G�r�o �p �N�e�t�w �r � �n�t �n�u�e�s� �t � �r�e�m�a�i�n �a� �u � �o �k �c�o �i �o �
�h�a�v�e �a�r�t �d� �r �i�s�t�e�r �n�g� �o � �t�h � �i �e � �F�e � � �s�t �e �e�g �i �n �e �s �t �. �w�s�u�c�c �s�s� �s�t�o �y�e �r � �-
�d �n �e � �a�s� �w�e �l�.�o �a�t �d �l
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�r�e �e�i �e�d �r�e�s�p �n�s�e� �f�r�o�m� �o �n�d �3�0 �B �o �d�c �v � �o �a�r �u � � �l �o �
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�l�i � �O�n�g �e�k�e �l �.
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�T�r�a�n �f�u�s�i�o � �c�i�e�n�c�e� �d �B�l�o�o�d� �r �s �u�s�i �n�.�s �n �S �a�n � �T �a�n �f �o �
�I � �w�a�s �a�c �e�p �e � �b�y� �B�l�o�o�d� �T �a�n�s�f �s �o�n�t � �c �t �d �r �u �i �.
� �B�o �a � �B�l�o �d� �G �o �p� �M �e�t � �o�r�g�a�n�i �e�d�m�b �y �o �r �u �e � �w�a�s �s �
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�r�e�s�o�u �c�e �d �i�m�e�.�r � �a�n � �t
�3� �u �i�t�s� �o � �B�o �a � �B�l�o�o�d� �G �o �p �l �o � � �n �f �m�b �y �r �u � �b �o �d
�w �r�e �t �a�n�s�p �r �e � �t�o� �J�a�m�s�h�e�d�p�u�r �o� �c�a�t�e�r �t � �e � �r �o �t �d � �t � �o
�a�n� �m�e�r�g�e �c �.�e �n �y
Sankalp Patrika Volume 5 Issue 9 Page 7 Sept 2015
u n o o s s i Co nselli g d n r i an mportant and n d a ng i h thandli g the donor an c lli h m/ er o
a t d k ng. u sintegr l par of bloo ban i Co nsellor t b nk o f r heheir blood a f r urthe tests. W ther
v i p a t oha e var ous roles to l y in he bl od t s g r a a hhi is ri ht or w ong is subject of muc
b n i p I v y b o n i na k ng setu . n oluntar l od do at o wi b .der de ate
d a e or l y t r o rives, couns ll p a s he ole f
s e ng t h d be e ona on p aki o t e onor for blood d ti h a le s r e nc n e T is rtic umma izes th i ide ts ov r
he e e nc a e t n r w r h /she e our g s he do o to l h he b nk the ast few mont s where t blood a
a t as r c t r q ir d donate nd ge s an su an e tha e u e aff/ a eat mst counsellor h ve cr ed uch
a i e i e Any pre don t on crit ria s m t. a e a lunw nt d havoc. H nd ing donors who test
ti n o s a l d ques o s/c ncern rel ted to b oo s e V H p t s u epo itiv for HI or e a itis i q it
n i n t f m c i u ido at o (apar rom edi al ss es wh ch n e o mo io challengi g b cause f e t nal and
a d e s t o ) ssh ll be a dr s ed by he d ctor , hould i . T s i l r soc etal reasons his is e pec al y t ue when
b a e e by oun l .also to e nsw r d the c se lor e i ma on a i l e i tth nfor ti of poss b e inf ction s o
l houg o n e s i n d A t h n t ec s ar ly experie ce to do e o m a t m i lb c m unic ted for he first ti e. It s a so
i n b o k ith s, ma y l od ban s have a person n a w l nown f t at s o l el k ac th a few ca es f Fa se
pl o .ace f r this o i i ar P s t ve e seen. Over
h t st e las 6 month ,
H v o ns lowe er, c u e lors Sankalp RK team has
ar r qui t ae e red o play a os a 4 come cr s atle st
uc m r tm h o e impor ant as s w h dc e here t e bloo
l a h b oro e fter t e l od a n r hb nk cou sello as
i idonat on dr ve. Every r t d ig if antc ea e s n ic
t o l iuni c l ected s agedam .
b c e t t s s fsu je t d o e t or
I H pat t -H V, e i is 2 I c e t b oon 2/4 as s, he l d
r a f p i v o d t . A n rd e d ul sero os ti e c n i ions do o a l r n e he d t t t sb nk counsel o i form d t onor ha i i
s o s m ewho tests po itive f r the e ust be referr d o t ha h h v t s ealm s true t t t ey a e been e t d
t g e C s l a eto he Inte rat d oun el ing nd T st po i i an ha e us s t ve for HIV d t t th y m t come
C n e T ) pr on le tr (IC C where ofessi a o o o ban f r i tver t the bl od k o conf rma ion. This
c o r q i g aounsell rs with e u site knowled e nd c e a d m e f t e do reat d a aging f ec with th nor
e e i c o ha g u s k xp r en e f ndlin s ch donors pea to un e q e nt m s d r u stion going i o a ental hock.
m ne e s y e s the and plan c s ar n xt step as h r g v n n t k oun T e donors we e i e o o her bac gr d
r d o e , s d b o requi e . H w ver the e ays l od banks nf at o . t e e t hei orm i n It was no v n old to t m
r p i e e h I i a e ado ting a d ff r nt approac . n th s, if he n m i s bthat t i for at on mu t e kept
f nor ho p i v they ind a do w has tested os ti e for o f t l d t t t n r e d tc n iden ia an ha he do o n e no
uc e e , y he i t e es h dis as s the do t f rs l v l c h e k s me nt a hepani . All t es mista e a th t t
d i by i d s lhan l ng the r own bloo bank coun el or nor f r h / r nd f l .do in o med is her f iends a ami y
Donor Counseling - the long road ahead
"Believe you can and you're halfway there." - Theodore Roosevelt
Sankalp Patrika Volume 5 Issue 9 Page 8 Sept 2015
"The best and most beautiful things in the world cannot be seen or even touched -
they must be felt with the heart." - Helen Keller
r co ba tSuch seve e mistakes can me ck o h t T ey then went ahead wi h independent
s. o b ca t ehaunt u Blo d anks must edu te h ir h r nv ce. Fo otesting at a lab of t ei co enien r ne
a e pr m ststaff bout the whol ocess. They u be r wh h ega dono en t e result was n tive, the
m o h eq ce oade t realize t e cons uen s f Sa l p di a w l ed nnka p cam coor n tor as ca l a d
i c ni ti n. a ncomplete ommu ca o Ide lly thech ded a u i pi nd ab sed saying that it s a lan to
o t erbl od bank mus nev be c s cau e panic and extra t
v l a i m stin o ved nd t u be ey et On o enmon c. e don r ev
el e tsol y l ft to ICTC o handle ea en lthr t ed to take lega
h s. E h tt i ven if t ey have o be n r l actio fo the menta
n o a l r i ed i v lved, wel t a nr d f n n a t auma an i a ci l losses
rs us he d hepe on m t a t e ei n c u r r d t o g t
c c ommun i a t i on w i t h f r s ncon irmato y test do e.
on s. u su d or Co nselling chsev a t p After eral t em ts to
do s i rnor is a d ffe ent thing ci r pa fy the dono and the HR
get er Sof t a n nalto h . t skill r ining, trai i g on g t o t e t a i sof the or aniza i n h si u t on wa under
co n q y cimmunication tech i ues are ver cru al control.
f em t e or each m ber of h blood bank team.
I t s h b a fn 2 o her ca es, t e blood ank st f called
a o t f w ectWe ppeal t blood banks o ollo corr a k i f m 2up the S n alp team and n or ed about
c c d b est npra ti es. Bloo anks must inv i n s est s si ido or being t ed a po t ve. The staff
p h s training rograms for their staff. T i must ea a claimed that since they were unr ch ble on
n u bo h i l a d o ai cl de th tec n ca n behavi ur l o w ed l l ph ne they ant Sanka p to ca l them and
r i i gs. M i s o s it a n n ore mportantly er po it ve n r D sp equ i h ti fo m. e ite r est ng t em to ry
se m st ef e t I t ca s u be r err d o CTC. I isl er m n r t e o l ka t native ea s to each h d nor i e
ect h oo s e incorr on t e part of bl d bank to takl r h semai or postal add ess etc, t ey just ent
si u control of such t ations by themselves.e l a .out th name and other detai s to Sank lp
Sankalp Patrika Volume 5 Issue 9 Page 9 Sept 2015
"If opportunity doesn't knock, build a door." - Milton Berle
c m b t r l n i g o kLesser a ps, e te p a n n f r Ra ta ri e n 1 s w ed v at Tata Power o 2 August a clos
Kranti to 100 employees coming in to donate.
t w o r r n Plen y of donors h egula ly do ate in
D a io u r n hue to patr tic fervo r g ippi g t e city m e p e a Sankalp ca ps wer ha py to b b ck
a o n en en d r u d Indep d ce ay the number of . w ke sig i nagain Tata Po er ma s a n fica t
b d o n fa t loo donati n drives i were r oo many. u io y izcontrib t n b organ ing drives every 6
h es, a a n t oAt suc tim S nkalp takes a st nd o t n hmo t s.
ise t m is enorgan oo any drives. Th sures a
ala p y f o w h tb nced su pl o blo d it ou P a iost Independence D y the team organ zed
i g o eoverload n and leading to p ssibl 5 o e n s o drives to cater t th eed t wards the
H n t e m u u , t e wastage. e ce in h onth of A g st h en m A d a 6d of the onth. rive t Temenos saw 4
rg n n lo o ives team o a ised o ly 7 b od donati n dr co d S it l T tunits llecte by E I Hosp a . he drive a
o lle f f oleading t a co ction o 603 units o blo d. C r 5 lo o o hIdea ellula saw 4 b od d n r eroes
h o v rse wT e rate f ad e events as quite high o a in w Ho a nd n t g to Bo ring spit l a d young
p r o t r n h h y a acom a ed t o he mo t s in t e e r nd o z a students f A im Premji University lso
s u % d i f hwa abo t 4 . The intro uct on o t e a e h i h v g 8 n s m d t eir contribut on by a in 7 u it
d a s h w meferr l protocol ha s o n some pro ising n o V ria it l lo a do ated t icto Hosp a b od b nk.
re . e n r g o esults Th do o screenin was d n on a o a a e f eoGo d publicity saw a f ir sh r o p ple
m g e d aore pra matic basis. W ha bout e a l u io s.com forw rd in a l these instit t n
7 % h m17. 5 deferrals in t e onth.
Sa o c e te u enkalp als onn c d to H aw i
e r z o lyTh first 15 days saw us o gani ing n 2 T g t is . A b nechnolo ies h month lood donatio
s.camp d s w o h o orive there a m re t an 200 d n rs
an o f o rturned up. Const t fl w o d no s
r a o 1 u 2 1 a A d ive was org nized n Aug st 0 5 t h h 8 edt roughout t e day saw 1 0 units collect
n h st e lo f hTaj Vivanta. E t usia ic mp yees o t e s o n k h itby Ra htr tha a blood ban . T e un s
o ca r r ah tel me fo wa d in good numbers nd lle se t o rco cted was of immen help o u
g r n .ea erly waited for thei cha ce to donate 33 ssem id a sh thala ia k s at our Samr k a centre.
r a units were collected by Victo ia Hospit l. A u f d f O r inal rive o the month was at AIG
News and Updates from August 2015
Sankalp Patrika Volume 5 Issue 9 Page 10 Sept 2015
"The best way out is always through." - Robert Frost
wh r really oo educatio an ar iac h i oncern a d ey e e e again g d n d c d ealth s c ed n th ar
m tiv n saw m r th 3 % f th eing th sam In pite f th eve o atio o e an 0 o e b offered e e. s o e r
em oyees fo m b in e cam 1 1 s r lo d the s res u pl r a ee l e at th p. 3 increa ing wo k ad an t s d e to
u its e e fina ly c lle d b ra an a it s. d a d e team is c mm n w r l o cte y Na y a cap c y v em n , th o itted
Hru ayala a oo k n ing th c il eive e b t d y bl d ban . to e sur at each h d rec s th es
treatme t. n
a k w u d l th k e s p rt f all S n alp o l ike to an th u po o
es o izatio s for eir u ort e Pr je sh ad 19 v its with 3 th e rgan n th s pp to th o ct Samrak a h 1 is 2 6
a s o vo n y b o d n ti n u i tran f s th m n f u uc u e f lu tar lo d o a o . n ts s u ed in e o th o A g st.
H w ver en u y n i u g tho e , g ero sl co tr b tin to e
h s l b s t th c tre a th ru t e u tle a e en re e p e-
t s a t d po t-tra s lan fol w upsran pl n an s n p t lo - .
e a w ys as tr tth a blo d b kLik l a , R h o an o an
a e a ailab e ed un tm d v le all n ed its wi h
vera e g of b o u its eing da s ld a g a e lo d n b 5 y o
nd th es n e be g 3 our . e a e proc si g tim in h s Th
ve all h sp satio as o rs. e o r o itali n w 7 h u Th
c tre as b n le o do a great j b en h ee ab t o
m i tain n e p e tran f on e g bi a n i g th r - s usi h mo lo nhal ss m a Man m nt and C rT a e i age e a e
le 9 /dl. T e ce tr a e oo vels at gm h n e m d g du u rn d o t to a epti n l A g st tu e u be n exc o a ly
pro s e DE a s an als gres with th XA sc n d os onth at r Gan i Institute f bu y m Indi a dh o
in tiated c rdi v u a s g Th i a o- asc l r creenin . eil H l . Th r w r 2 6 n is Ch d ea th e e e e 3 patie t v its
tea at Samrak i pu n in in sm sha s tti g ten e with to l o 31 t s usio s Th ita ta f 9 ran f n . e capac y
ff r to l id ti the fi s igns e o t ear y en fy r t s of o e c tre i eing utiliz d fu ly nd if th en s b e l a s
om lic ti n a d u ld a it to ic p a o s n b i cap c y in tiate b g h . an s to p n o b odein stretc ed Th k le ty f lo
orr ctive a tio sc e c n .be g availabl in he ity we d bl d u itsin e t c ha oo n
wh h were ay ld o verage be gic 5 d s o n an a in s a ters would a r e, os oAs many tran pl n g e m t f
give th p ts with rs o n to e atien 2 hou fthe w rk wh h c n i te e s cc s o o ic o tr bu s to th u es f
r c sing ti . Th w in pi of 1 in 6 p o es me is as s te b n marr w tran lan n h pens t o e o sp tatio s ap a
nits f bl d eing o is from lo d u o oo b rgan ed b oth tha a sem ce tr s. e ad capaci e l s ia n e W h a ty
a k o tsi th n tu o r, a s b n s u de e i sti te. H weve th nkbui ing r r m here here sld p og a w t wa
e sh er an m o tran s n , to th e qu tu f sfu io sdi u sio on o to ensu tha the sc s n h w re t
h u n b a e f cu t an th a sc ed li g ec m di fi l d e veragech ld en o ar ndertaki g man eme t i r wh e u n ag n
p e tran fu on H fell 8 17 gm d r - s si b to . / l.e m i tain d in st po sib h p n ar a n e be s le s a e o ce
M ian h sp atio u atio co tinu oed o italis n d r n n ed t e find atch It tru th t e out o th y a m . ’s e a th c me
h at o rs. T e centr l om leteover 7 h u h e a so c p d f BMT d ends p n e hy io g ao ep u o th p s lo ic l
th n al c rdi c r en an s toe an u a a sc e ing, th k s of e h d c d th ferr tin levestatu th c il in lu ing e i l,
J ya eva n tu f Car io gy. Th eea d I sti te o d lo r e live iz nd t s een iz etcth r s e a he pl s e .
ch ld en n sp ial atten n o far ei r eed ec tio s as th ir
Sankalp Patrika Volume 5 Issue 9 Page 11 Sept 2015
"Whoever is happy will make others happy too." - Anne Frank
H wever wh s l ue i th u n w y e perso o is man in he a ls o , at i a so tr s at si g a a th n wh ag g t c l
p o er th r y the e se to th n e el in n mb r e y, it r p e ap , damag cau d e o th h p-l e u er fo th da
bo y c n e r ver ed an e c i a b u ts t d i da fo e d a b e s d th h ld c n e amo n o a very iff cult y r th
brought o ig er k to lo e r k lu te s Augu t w o e c m n . fr m h h ris w r is vo n er . s as n su h o th On
ca ego ies ior o pr e g f an th ity as spe te se in t r pr t oc edin or one h d e c w de ra ly ek g
t s a ts th i in n n our a s p et nd n th other h d w ha ran pl n . wi th s te tio , te m latel a o e an e d
ear d up fo of the ar do -staging d u y r a i n for pe le man g e r state t wn iffic lt o g n si g op to age
o am n lla tion wit e c l . Th sha th n sp pr gr a d co bora h th a ls en Ak ta, e ew Re onse
nsp t . Centr xe ti c m . sh ick p htra lan teams e E cu ve a e in e p ed u e
ta k a h d r q i ly an le rn ths t an ve y u ck d a t e
diti th st tra s lan fol wu in a ies o f r ti ti g b b odIn ad on, e po n p t lo p is tric c f di fe en a n etween lo
als mo tive i n in t i d an requ sts ro i i ap rop at o re effec f do e he fr en ly d e and p v d ng p ri e
m r fa il vi o m t f the d y ar o tio so e m iar en r n en o a c e s lu n .
c tre ra e th th o pitals em lvesen th r an e h s th se .
Wi h this n ti n step ar b n taken to o , n t o ly die she take the reg lar blo d t i ten o , s e ei g N w o n s u o
en u e th t th c il wh n erta e eq es ic can b an ed with e s r a e h d o u d k BMT r u ts wh h e h dl th
w th k l supp n n e to eive oo sto ks n e oo ban s h as o i San a p’s ort co ti u rec bl d c i th bl d k , s e h als
es a e os nsp t th u he d y b n ta ing e of e e hich req ire b t c r p t tra lan ro gh t a ee k car r qu sts w u
a c tres. d n r , si gl o o p ts an eve c re en o o s n e d n r latele d n
s e rar lo d gro ps he o n f om e b o u . T ptio o
e e nc T am nd the ood Th Em rge y e a Bl ge g n d d ic on a si g call en ttin i forme a v e n le wh
e p-l nH l i e it co es to need o oo s a r tr n m f bl d i ve y s i g
Th bl od -lin h c stent y een a set. Th o n v le th o g the o help e as onsi l b s e inf rmatio a ailab r u h e
rec ing 3 - 0 oo r u ts an e -lin i b om mo elab aneiv 0 6 bl d eq es d a total h lp e s ec e re orate d
c l ad o b u 00 a ls p y not to itu n c rate. e tio oa l lo f a o t 1 c l er da ( s atio ally a cu With th op n f
forge the 20 u ts wh h c me i t e c ing u to th el n o callt % req es ic o n he r a h o t e h p-li e n a ,
mi le f he ig t). u h bu y l s a yo e a see s stan e.dd o t n h With s c s a mo t n n c n k a si c
sc ed le hen an n r na takesh u s, w u fo tu te event
Sankalp Patrika Volume 5 Issue 9 Page 12 Sept 2015
"To the mind that is still, the whole universe surrenders." - Lao Tzu
n b est d h st t nO am is the igg an t e mo impor a t a t a io a ly b yOn m in ern t n l in a ig wa and
l t hfestiva of the state of Kerala. I is a arvest T ist e K r la d ri celebrates ' our W ek' for e a u ng
l a afestiva nd is celebrated with joy nd cel T ic Onam ebrations. housands of domest
e h h a e p lent usiasm all over t e st t by eop of all rei u s o e and fo gn to ri ts visit Kerala t b a part
co n es. g p la g dmmu iti Accordin to a po u r le en , O mof na .
t l r the festiva is celeb ated o welcome King
b li e o isitMaha a , whos spirit is said t v Kerala a iv Onam is lso a harvest fest al. It is
i n leb at the t me of Onam. O am is ce rated in e a ed t a im h hc lebr t a t e w en everyt ing
h b in t n et e eginn g of he mo th of Chingam, th a s n e eappears o nice a d good. Th b utiful
st o Ma a a a a en rfir m nth of l y l m C l da la f Ker la b inndscape o a can e seen its full
rsh ) is o o d it t e (Kollava am . Th c rresp n s w h h r d n h im f t Ma ya ia ce at t is t e o he la alam New
o t f g st b c m n h o Au u -Septem er a cording to . ea lso s bYear W ther, it seems, a seek to e a
gGre orian Calendar. a t o t e i t co t yp r f h fest val. I n ributes b
eco ea n db ming pl santly warm and su ny. Fiel s
n la s o aCarnival of O am st from four t ten d ys. o t t a b l lo k brillian wi h ountifu harvest.
a n en h hFirst d y, Atham a d t t day, T iruonam rm p o w ld s h Fa ers feel on to f the or a t ey
a e st o f a l.r mo imp rtant o l Popularity and h u it watch the result of their ard labo r w h
p o r lt re f resentation f ich cu u o the state pride.
d in a a nur g the carniv l m de Onam the Natio al
st o r la v li,Fe ival f Ke a in 1961. Thiru athira ka g t u ig Story oes tha d ring the re n of mighty
a rm t m in a d nce fo with rhy h ic clapp g is a ra e o kin h b lsu (d m n) g, Ma a ali, Kera a
er u o a y a ep formed d ring n m da s. Elabor t w i E itnessed ts golden era. very body in the
lk so g e t n i feasts, fo n s, legan da ces, energet c st t a a p er n a e was h ppy nd rosp ous a d king
es, lep a a d flo rs a e gam e h nts, bo ts an we all r a d y is p rw s highly regar ed b h subjects. A a t
h y a l ca ed a part of t e d n mic festiva ll Onam. o is v a dfr m all h irtues, Mahab li ha one
t ken oGovernment of India has a due n tice of o H w s o cshortc ming. e a eg isti . This
b t d l othis vi ran an colorfu festival. It prom tes k ess a li' chwea n in Mah ba s aracter was
Onam: the color of god’s own country
Sankalp Patrika Volume 5 Issue 9 Page 13 Sept 2015
"From a small seed a mighty trunk may grow." - Aeschylus
utiliz d b Go to g end to i r gn e our e m co s tin o 1 to 3 e y ds brin an h s ei nin c s eal n is g f 1 1
as e fel h en ed y Mah ss tial di e asadya s served o th y t c all g b abali's e en sh s. On i n
gro i g p pular y. H r o l e g od a an l ves an peo le si o a at a d w n o it oweve , f r a l th o b n a ea d p t n m l i
de one b a ab l o gran i n the floo to a e me l o er ed d y M h a i, G d ted h m a o r h ve th a .An th
bo n at he c u an u y is i pe le c an g featu e o On allam a , o th o ld n all v it h s op en h tin r f am is V k li
w th o h w so a e It i th v sit the Sna Boat R e, h ld o the river i wh m e as ttach d. s is i ke ac e n
f abali at leb ted as am very P a is a ol u fu gh to wa h th o Mah th is ce ra On e amp . It c o r l si t tc e
. eo le make a l ff rts cel r e d orated oat o ed y h n r s f year P p l e o to eb ate th ec b ar b u d ed o
tiv a gran a d i r ss u o bo en ds an n of s n anfes al in d w y an mp e p n atm ami t ch ti g o gs d
eir ear K n at ey ar app d wish cheerin y sp ta r .th d i g th th e h y an g b ec to s
im well.h
T ere is als tradi n la a esh o a tio to p y g m ,
R h cultu h r e f Kerala om u in o ctive alled Ona alik On nic ral e itag o c es o t c lle ly c k al, on am. Me
its b t r d sp d rin e ten ay o n for i rous po ts li Ta a pan ukali es fo m an irit u g th d g i r go s r ke l p th
lo g fe l n eed a tr a e a ar aye b l be y c ery , n stiva . It is i d e t to b p t (pl d with a l), Am y al (Ar h )
of e gran c rn l t ic l ona y tu ut a d c bats calle K y an ali th d a iva .A yp a m sad a. Ku k u n om d a y k
P le era k e b a e n Atta alam. Wom d lg n u ral eop of K la ma e la or t a d k en in u e i c ltu
r para ons c ebrate t i e est acti itie T ey make i tricatel des gn d p e ti to el i n th b v s. h n y i e
os ibl man e . Re io s a d tr itio al flo m ts c d, Po k l m th ro t p s e n r lig u n ad n wer a alle o a a in e f n
eo e of Kera a in erely lo all the co t ar o o o e om Kip pl l s c fol w ur y d f h use t w lc e ng
u toms d t it ns s t b h ir Mah . a ko i k l an h m i u a c s an rad io e y t e abali K i tt a i d T u b Th ll l
nce or . nu ber of cul t a a wo g l d nces p d b a st s A m ur l re t racefu a erforme y
p o ra me d nces so g an e s w m o On m ol erf rman es lir g m s, a , n s d f a ts o en n a . F k p o c ke
m rk e e v e m st i ress par u matti kali an P li a i a d to the zes fa th f sti al. Th o mp ive t K m d u k l d t o
o am eleb ti n s he g nd e s alle ele n .f On c ra o i t ra f a t c d c bratio s
On y r par d iru n m isasad a, p e e on Th o a .It a
Sankalp Patrika Volume 5 Issue 9 Page 14 Sept 2015
"I dwell in possibility." - Emily Dickinson
o h a i oJust pri r to t e inaugur t on f our BMT unit included:
h 1 , o i e a u v n e a it reon 27t August 20 5 we rgan s d h ge ariatio in th qu l y of ca
in ivere a t e be g del d cross the centres in hp v ti nWorksho on Thalassemia Pre en o ,
t coun ry.a e n C eo wM nagem nt a d ure. P ple ho have
u e i t e oh g variation n h cost f care.co d h o h ummitte t eir lives t t e ca se of
t lim d o enhe ite penetrati n of evid ce t ia ro a o t e rhalassem f m ll ver h count y were
m n h h h ebased edicine i t e ealt care d livery er m e y ogen ous enough to co e all th wa t
.setupa t i w k o dp r icipate in th s or sh p to discuss an
e e est a e e gd liberat on the b str t gies b in
W i t ese b s e mh le all of h pro lem ar com on p ll e u .ado ted a ov r the co ntry
a ss s t e l hcro all arena of h pub ic ealthcare
e nic ses tup, in case of chro di ase e o d n ea o Th pr gram ha 3 sessio s, one ch n
n t o h ,ma agemen , especially f r the c ildren a even io , a n Thalassemi Pr t n Man gement a d
h im c io s re ’ n tt e pli at n a very serious. It s o a sessio ed w e ieCure. E ch n start ith xper nce
t h ld o surprising tha 90% of t e chi ren b rn withls re t hsharing by individua rep sen ing t e
ssem ie i o t o r r thala ia d w th u access t p opea ich w h ve norg nisations wh e believed a do e
d a en .care an m nagem t p o ll e pioneering w rk fo ow d by o en house
d ssio . Mr Tiscu n Vinay Shetty from hink
t o u o f hOne way o h pe for the resol ti n o t e Fo n a io , a l h se siu d t n Mumb i ed t e s on on
b s r t e G ver tpro lem is wait fo h o nmen to take h as e i RT al s mia Prevent on, Dr eshma
e e re is o f s etsom st ps. The a lot f ocu on g ting Pr j a ha,Srinivas from o ect Samr ks
t is d w , s a rg n nh one. Ho ever a n o a izatio t t a e Rash rot hana Parishat, B ngalor led the
S n a p b t t re s foa k l elieves tha he i scope r n n t a r Psessio on Ma agemen nd D riya
m t n h o erore o be do e by t e ther stakehold s, o t it t f Marwah from S u h East Asia Inst u e o
n u i g i t o n - o s,i cl d n pat en gr ups, on pr fit ia t e n o Thalassem , Jaipur led h sessio n Cure.
re c. h a d yhealthca setups et w ich can d qualit n est g t ics, in h s I -spite of very inter in op sig t
d rel b y t e iver o an ia ilit to h del y f care even in n ib re ha d enthusiasm to del erate mo , t e
it se h re resource lim ed tting. T is is whet i a t r olimi ed t me vailable for he wo ksh p
o t es n p s h e inn va ion com i to icture. Thi is w eru e b l ck hbecame a h g ott ene . However, t is
o e sh netw rking and knowledg aring is anw rk o i h a rg n reo sh p, wh c w s o a ised mo in a
it in en d henabler. w h that t t in min we ave r m eo g n aound table anner with p ple etti g n
c o s hinitiated su h pr gram and ope to o it i cu n eb t h ipportun y to d s ss a d d a e as n the
o o f continue to rganise m re o these. Huge s o et o o repa t sh wn b ter outc me c mpa d to the
m t c a u g n pa oun of ap city b ildin a d com etency r d n cla sp e dt a itio al ssroom like eech s an
i t r ss- t s s needed a g a roo level to fight a .t lks
t a ia o oh lassem . The best time t d it was
y s y h seco d s de terda , t e n be t is to ay. a ect w Few sp s hich came out very clearly
Workshop on thalassemia prevention, management and cure
Sankalp Patrika Volume 5 Issue 9 Page 15 Sept 2015
"A compliment is something like a kiss through a veil." - Victor Hugo
I u n lyAt Sankalp ndia Fo ndatio , We firm p it t ies ke hhap y inv e he famil to ma use of t is
e h ea eb lieve t at ch child must b given an o i P bopp rtun ty. lease spread the word a out
p n e e ect t eiro tio for complet cur irresp ive of h t e a t f t is n r t e ah vailabili y o h optio fo h f milies.
T e t is h financial status. he HLA t s t e first step T fa c o r a lphe milies an call u centr l he -line
h d es h h g e w ich etermin w et er the siblin can b er 9 8 r fu h tnumb 4 0044444 fo rt er informa ion
t d fr a ma che donor to the child suffering om en . e a nand appointm t W h ve limited umber
l n iatha assemia. The cost of HLA typing in I d f f in slo d eo ree test g ts an we consid r the
u R 0 p ch in is aro nd s. 10,0 0/- er ild mak g it o m i eligibility f the fa ily to ava l free HLA
a le m m U a elyin ccessib to ost fa ilies. nfortun t , o se se typing n a ca by ca basis.
st lie fr l s mmo fami s suffering om tha a se ia are
u o onaware of the p ssibility f cure. t e y 2 h l eS u p p o r d b C u r e C i d r n
u d lFo n ation, Ita y
T o s u en lyhere is g od new . C rr t , we are
fr H y iloffering ee LA t ping to those ch dren
la w ea t gwith tha ssemia ho have a h l hy siblin
o o o C ldd n r in associati n with ure2Chi ren
u n S s Fo ndatio , Italy. o far this facility wa
b t e ch r t k g sio availa le for h ild en a in transfu n
o S p a at centres supp rted by ankal . We re
We are offering HLA Typing
Sankalp Patrika Volume 5 Issue 9 Page 16 Sept 2015
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