THALASSAEMIA UPDATE 2 www.thalassemicsindia.org THALASSAEMIA UPDATE _____________________________ International Thalassemia Day THALASSAEMIA UPDATE We would like to thank the donors who contributed to the 8th May function 6 www.thalassemicsindia.org THALASSAEMIA UPDATE ___________________________________________________ Activity Annual Picnic The annual picnic was organised by Wonder “ Noida . It was a day full of 4.00pm. They enjoyed the various Thalassemics India on 28th March. fun & interactions. rides and a sumptuous lunch. Over 300 thalassemic children & The children & their families came in their parents visited the “Worlds of around 10.00 am and stayed on until THALASSAEMIA UPDATE 7 www.thalassemicsindia.org THALASSAEMIA UPDATE ________________________________________ News Across India News Across India Kerala: Kareem Karassery Blood Patients Protection Council (BPPC) Kerala has observed world Thalassemia Day at Regional Science Centre, Calicut with various activities with the support of regional Science centre, Calicut. Dr.P.K.Sasidharan, former professor and HoD of General medicine, Medical College hospital, Calicut inaugurated the function. He also released the special supplement Rajasthan: Naresh Bhatia related to Thalassemia Day celebration 8 ebZ eryc FkSyk’khfe;k cPpksa ds fy, and distributed the P.T. Anshif mRlo dk fnuA D;ksa uk gksA 8 ebZ memorial cash award for Thalassemia vUrjkZ”Vªh; FkSyk’khfe;k fnol ds :i esa patients to those who had passed the iwjs fo’o esa euk;k tkrk gS vkSj bl ckj rks SSLC public examination in 2016. FkSyk’khfe;k cPpksa dks tdsyksu vLirky esa V.S.Ramachandran,Director,Region 22 csM dk u;k uosyk okMZ feyk gSA THALASSAEMIA UPDATE al Science centre presided over the ts-ds- ykWu vLirky esa lqcg 9 cts ls function. He honored Dr. Sasidharan fo’ks”kK MkDVjksa }kjk FkSys’khfe;k cPpksa for his year long services in the Maharashtra: Dr. Sangita Lodha dk iw.kZ pSd&vi fd;k x;kA fo’ks”k :i Hematology wing of Govt.Medical ls Mk- lanhi dqekj ekFkqj ,oa Mk- lat; On the occasion of world College hospital, Calicut. Kareem ljy ¼,.MksØkbuksyksftLV½ }kjk FkSys’khfe;k THALASSAEMIA day, a huge Karassery, General Convener of BPPC cPpksa dh xzksFk gkjeksu lEcU/kh tkap dh Thalassemia awareness cycle rally had welcomed the gathering. K.C.Ashraf xbZA isfM;kfVªd foHkkxk/;{k Mk- lhrkjeu been arranged , which has spread proposed the vote of thanks. After the us FkSys’khfe;k dh jksdFkke dh jksdFkke ,oa inaugural function a patient’s parent’s the massage about Thalassemia in mldk mldk mipkj Mk- lanhi tlwtk ,oa session took place. In the Parents the whole of Nasik city. Mahindra Mk- y{ehdkUr xks;y us cksuesjks VªkalIykaV ,oa Mk- dfiy xxZ us crk;k fd fiNys fnuksa session Moideen Poovaduka,K.Raja and Mahindra has taken this initiative fnYyh ,oa mÙkj izns’k ls vkbZ Vheksa us nksuksa Gopal,M.K.Sajna,Padma Kannan,C. along with many organisations , vLirkyksa dk nkSjk fd;k Fkk vkSj ;gka dh Lasitha Rani,N.Hamza shared their like the Jankalyan blood bank ,Thal Foundation Nasik, Touchwood FkSyslhfe;k fpfdRlk ns[kdj izHkkfor gq, experience from various angles. vkSj gekjh O;oLFkk vius ;gka ykxw djus Foundation,Nasik Cyclist Foundation, dh dk;Z iz.kkyh gels le>hA ,l,e,l In the patients session Manjusha, Indian Medical Association, Indian Raheem Nandhi,Hasna.F.S,Fasila,Ma vLirky ds vfrfjDr v/kh{kd Mk- lrh’k Academy of Paediatrics, Arihant qsood, C.Navya and sabith shared dqekj oekZ bl dk;ZØe esa fo’ks”k :i ls hospital, Rotary smart city etc. their experience beautifully. After i/kkjsA mUgksaus 18 o”kZ ls cM+s cPpksa dh dr Sangita Lodha addressed the the function a painting competition fpfdRlk laca/kh leL;kvksa ,oa muds people about Thalassemia. There was conducted for the Thalassemia fujkdj.k ij izdk’k MkykA affected children. Hafeef and Navya was the Inauguration of a book la/;k l= esa FkSyslhfe;k cPpksa }kjk / won the fi rst and second prize in “THALASSEMIA MANAGEMENT AT kekdsnkj lkaLd`frd dk;ZØe larksdck nqyZHk the contest. Kareem Karassery, Gen. A GLANCE” compiled by Dr Sangita th vLirky ds gseyrk lHkkxkj esa izLrqr Convener of Blood Patients Protection Lodha done on the same day. fd;k ftlesa 5 lky ls 25 lky rd ds Council distributed the prize for the FkSyslhfe;k cPpksa Hkkouk] foiqy] fjrq] ghuk] winners. Various cultural programs [kq’k] Hkwfe] lkjk] ferqy] vfurk] usgk vkSj were also organized in the function. Hkkfodk us eueksgd izLrqfr;ka nhA dk;ZØe esa okyhoqM flaxj jfoUnz mik/;k; dk vkuk In this part of the function the Blood FkSyslhfe;k cPpksa ls mudk izse n’kkZrk gSA Patients Protection Council submitted izfl} xkf;dk e/kq HkV~V dh lqjhyh vkokt a memorandum to the Hon’ble esa lHkh [kks x;sA ;g iwjk dk;ZØe vkpZ Parliament Member Sri.C.P.Narayanan izeks’ku lsok,a nsus ds fy, os c/kkbZ ds for helping to get the disabled right ik= gSA for Thalassemia, Hemophilia and dk;ZØe ds vUr esa FkSyslhfe;k fpYMªsu Sickle Cell Anemia. lkslk;Vh ds v/;{k Jh ujs’k HkkfV;k us lHkh vkxarqdks dk /kU;okn fn;k vkSj 11 www.thalassemicsindia.org THALASSAEMIA UPDATE ________________________________________ News Across India lekt ds izR;sd oxZ ls FkSyslhfe;k jksdFkke ,oa mUewyu esa lg;ksx ds fy, jDrnku ,oa /kunku dh vihy dhA Madhya Pradesh: Dr. Ravindra Kumar On The occasion of world thalassemia day, 8th May 2016 Sri Aurobindo Medical College and PG Institute in association with Indian Academy of Pediatrics (Indore Branch) organized a one day CME program of doctors and interactive counselling session for patients and their parents. Our Jharkand: Dr. T.K. Chatterjee keynote speaker Dr V. P Choudhary, Director of Sunfl ag Pahuja Center for 8 ebZ 2016 vkt ^^MkW-,l-ih- QkmMsa’ku** FkSyslhfe;k fpYMªsu lkslkbVh t;iqj }kjk }kjk 8 ebZ dks ^^vUrZjk”Vªh; FkSyklsfevk jfookj dks larksdck nqyZHkth eseksfj;y blood disorder and former Head of the department of Hematology fnol** LFkkuh; ^^cqyscMZ gksVy**] fc”Vqiqj vLirky ds vosnuk vkJe esa FkSyslhfe;k esa vk;ksftr fd;k x;kA cPpksa dh lgk;rkFkZ fo’kky LoSfPNd AIIMS New Delhi gave an excellent jDrnku f’kfoj esa 455 ;wfuV jDr ,df=r coverage on clinical diagnosis of dk;ZØe dk ‘kqHkkjaHk eq[; vfrfFk ekuuh; THALASSAEMIA UPDATE fd;k x;kA thalassemia also actively counselled Jheku~ lj;q jk; th] ea=h] [kk| vkiwfrZ the patients for better management of foHkkx] >kj[k.M jkT; ljdkj us MkW- ,l- larksdck nqyZHkth eseksfj;y vLirky thalassemia. Other speakers Dr Rawat, ih- pVthZ ds QksVks ij ekY;ki.kZ ,oa }hi ds vosnuk vkJe ij izkr% 9 cts esa gh izTtofyr dj fd;kA jDrnkrkvksa dh HkhM+ mebuh ‘kq: gks xbZ Dr Siddhant Jain, Dr Tanmay Bharani tks nksigj 4 cts rd tkjh jghA jDrnku & Dr. Preeti Shukla explained gave an bl volj ij MkW- ih- ih- cuthZ] MkW- lh- f’kfoj esa iq:”k ds lkFk&lkFk efgykvksa us idea about the recent management, ,l- nyky] MkW- ,l-ds- cuthZ] MkW- ,u- Hkh mRlkgiwoZd fgLlk fy;kA t;iqj ‘kgj cardiological, endocrinological ds- flUgk] MkW- ds- ds- ‘kekZ] MkW- lqrik ds vykok jkT; ds vU; ‘kgjksa >qU>quw] aspects & diet plans of thalassemia. xqgBkdqjrk] MkW- Loiuk lsB] MkW- eerk xks;y] MkW- izHkkdj izlkn] MkW- Qqy pk¡n nhlk] Qqysjk] lhdj] lokbZek/kksiqj] Vksad] Dr Aswhin Dalal (Head of Diagnostic fpRrkSM+x<+ vkfn ls f’kfoj esa meM+h HkhM+ ls egrks] MkW- dkyhjke ekMhZ] MkW- vkseuk Division in CDFD, Hyderabad) tkslsQ] MkW- vkrad eaMy] MkW- lqthr egrks] ;g ckr Li”V gks xbZ gS yksxksa esa jDrnku explained gave an idea about ds izfr tkx:drk cM+h gSA jktq PkkS/kjh] egkohj egrks vftr cuthZ] the strategy and techniques for lquhy oekZ] vkfn Hkh viuh fopkj j[ksaA bl t;iqj lgj esa yxHkx 400 cPpksa bl jksx ls preventing thalassemia which is volj ij tknqxj fda’kqd dqekj us viuh xzflr gS ftUgsa 2 ls 4 lIrkg esa vUrjky esa rather more important as prevention tknq ls n’kZdksa dks eksfgr fd;kA /kU;okn jDr p<+kuk iM+rk gSA CyM cSadksa ls jkstkuk is always better than cure. Mrs Kkiu MkW- ih- ih- cuthZ us fd;kA djhcu 30-35 ;wfuV jDr FkSyslhfe;k cPpksa Annaya Gosh aware us about the dks vko’;drk iM+rh gSA stem cell donor registry in India. Dr CyM cSad }kjk le;kuqlkj CyM dh vkiwfrZ Kuldeep Singh, (HOD, Pediatrics FkSyslhfe;k cPpksa gks blh mn~ns’; ls bl AIIMS Jodhpur) was also connected LoSfPNd jDrnku f’kfoj dk vk;kstu fd;k via telemedicine facility and listened x;k FkkA to the entire lecture presented here. bl jDrnku f’kfoj esa jDrnku djus okyksa He also gave his talk on Social and dks le`fr fpUg HksaV fd;s x;sA ethical issues which thalassemia a patient faces every day. In the afternoon there was a patients parents and doctors interaction program in which thalassemia experts gave the knowledge about better managment to thalassemic patients. Around 120 delegates participated in this event. 12 www.thalassemicsindia.org THALASSAEMIA UPDATE _______________________________________________ Information Congratulations ! • Gouri Gupta for scoring 96.4% in class 12th CBSE Arts Stream. • Chhavi Bajaj for scoring 93.2% in class 12th CBSE Commerce Stream. • Sahil Bansal for scoring 92% in class 12th CBSE Commerce Stream. • Akrit Jain for scoring 89% class 12th CBSE in Commerce Stream. • Arnav Choudhary for scoring 78.6% class 12th CBSE in Science Stream. • Chetan Chandana for scoring 75% class12th CBSE in Commerce Stream. Special thanks to Genesis Foundation for supporting 7 of our thalassemics by THALASSAEMIA UPDATE giving them fi nancial aid for undergoing Bone Marrow Transplant.