NL July Sep. 2017€¦ · Renu Saxena (HOD Hematology, AIIMS, New Delhi) started the symposium and...

HEMOPHILIA

CHRONICLE

HEMOPHILIA

CHRONICLE

A quarterly bulletin on Hemophilia

HEMOPHILIA WITHOUT DISABILITY, CHILDREN FREE OF PAIN

VOL 1, ISSUE: 02 I JUL-SEP 2017

Contact us: +91-11-26174020, +91-11-26175791

AGM 2017A N N U A L G E N E R A L M E E T I N G

34th

Agra

Agra

Annual G eneral Meeting

2017

th

34Hemophilia Federation India held its

th34 Annual General Meeting at Agra on th th16 & 17 September 2017. The venue

was Hotel Four Points by Sheraton, Agra. The meeting took place in the presence of 120 participants including Chapter Key persons, EC Members, Guests, HFI Staff and some volunteers. The Chief Guest for the occasion was Prof. Ram Shankar Katheria (Chairman o f t h e N a t i o n a l C o m m i s s i o n f o r Scheduled Castes, Minister of State for Human Resource Development, GOI) and the Special Guests of Honors were Shri S. P. Singh Baghel (Cabinet Minister, Ministry of Animal Husbandry, Minor Irrigation, Fisheries, Govt. of UP) and Shri Pramod Gupta, Advocate (Vice President – Brij Province, BJP, UP). The meeting is held annually in different regions of the country to present detailed information about the organization's progress and to deal with matters such as adopting the previous year's �nancial statements, appointing the auditors and to deliberate on various organizational issues.

2

VOL 1, ISSUE: 02 I JUL-SEP 2017HEMOPHILIA CHRONICLE

Dr. Prantar Chakrabarty (Hematologist, NRSMCH, Kolkata) explained "Management of Joint/Muscle/CNS Bleed in PwH".

Dr. Pamela Narayan (HFI- MSK Project Lead & EC Member, HFI) enlightened the participants on "Management of Chronic MSK problems".

Dr. Shashi Apte (VP Medical, HFI) delivered his presentation on "Surgery in Hemophilia".

Among the 12 Hemophilia Caregivers, there were 6 Physicians/Pediatricians, 2 Surgeons, 2 Pathologists and 2 Physiotherapists. The workshop was a great success and all the attendees were given participation certi�cates.

Hemophilia Workshop at Agra Northern Region

HFI-NNHF workshop New Delhi

2ND J U L Y

2017 The President Vikash C. Goyal formally invited Mr. Shady Sedhom, Programme Manager, Novo Nordisk Haemophilia Foundation to conduct the NNHF sponsored workshop on HFI Strategic Plan 2025 at the HFI Head office, Conference Hall, New Delhi. 16 members comprising 14 EC Members, the CEO (HFI) and Communication Manager (HFI) were present for the workshop.

thOn 17 September 2017, Hemophilia Federation (India) with the support of the World Federation of Hemophilia organized a Hemophilia Workshop for the doctors of the northern region at Hotel Four Points by Sheraton, Agra. The workshop focused on almost all aspects of Hemophilia Management and its current

scenario in the country followed by an interactive discussion on how these can be improved and upgraded. Dr. Renu Saxena (HOD Hematology, AIIMS, New Delhi) started the symposium and her lecture was on “Diagnosis of Hemophilia".

The meeting was very exhausting and as it continued, the participants were divided into four groups and tasked with SWOT analysis.

GROUP 1 Participants were Dr. Shashikant Apte (VP, Medical, HFI), Dr. Sudhir Kulkarni (EC Member, HFI), Rtn. Wg. Cdr. SS Roychoudhury (CEO, HFI) and Mr. Pawan Madhukar (Manager, Communications & IT, HFI).

GROUP 2 Participants were Mr. Vikash Goyal (President, HFI), Mr. Mukesh Garodia (VP Development, HFI) and Mr. Balshiram Gadhave (RCC West, HFI).

GROUP 3 Participants were Mr. Premroop Alva (RCC South, HFI), Mr. Deepak Singhal (EC, Member, HFI), Mr. Ajoy Roy (EC Member, HFI) and Dr. Prantar Chakrabarty (EC Member, HFI).

GROUP 4 Participants were Mrs. Gurmeet Khanna (VP Finance, HFI), Mr. Harshal Kale (Chairman Youth Group, HFI) and Mr. Shubhashish Behera (RCC East, HFI).

All the above groups were tasked with their objective for 2025 and the key activities they will undertake to achieve it in a speci�c timeline. The outcome was a clear roadmap and tasks to be achieved by 2050.

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HEMOPHILIA CHRONICLE VOL 1, ISSUE: 02 I JUL-SEP 2017

WFHHFI MEETING

Mr. Vikash C. Goyal (President, HFI) enlightened t h e d e l e g a t e s t h r o u g h h i s p r e s e n t a t i o n . H e along with the EC Members responded to the various queries of WFH team. The meeting was very conducive and M r. V i k a s h G o y a l r e q u e s t e d t h e W F H t e a m t o consider organizing a joint workshop with HFI ak in to the World Congress. He said that India h a s v e r y e m i n e n t d o c t o r s a n d v o l u n t e e r s working at the global level and HFI will prove to be a very good role model for other countries in the region.

SUPPORT

HEM

OP

HIL

IA

On the occasion of India's Independence Day,

the Indian Association of USA organized the

in which two “India Independence Day Parade”

members of the HFI i.e. Mr. Mukesh Garodia (VP,

Development) and Mr. Premroop Alva (EC

Member, HFI) participated along with their few

friends to create awareness on Hemophilia.

Chie�y, the Indian Diaspora was sensitized by

evoking interest through Placards and Banners.

parade in

4

HEMOPHILIA CHRONICLE

New York, USA

Independence Day


ndOn 22 July a meeting was held between the EC members of HFI and delegates from the World Federation of Hemophilia to discuss the current situation of Hemophilia care in the country and plan the further course of joint action based on the deliberations of the meeting. The meeting took place at the HFI Head Office, New Delhi and the WFH delegates present were Mr. Assad E. Haffar (Director, Humanitarian Aid, WFH), Ms. Salome Mekhuzla (Director, Regional Development, WFH) and Mr. Sachi Satapathy (Regional Manager South Asia & East Asia, WFH).

thOn 10 August 2017, the Chapter took out a Hemophilia Awareness Rally from Bakarganj's SS Public School. Mrs. Mridula, Municipal Education Officer �agged off the rally.

CHAPTER NEWS

th thOn 10 September 2017, the Chapter organized its 30 Annual General Meeting in which 106 participants including Chapter members, guests and doctors took part. Brig. (Dr.) S. Das (RR Hospita l , D elhi Cant . ) held a sess ion on Hemophi l ia Management and Mr. Animesh (Motivational Speaker) guided the parents on involving Children with Hemophilia (CwHs) in various suitable activities for them. On this occasion, the chapter distributed scholarship cheques to students securing

th th75% marks and above in 5 to 12 Class and 60% and above in their Graduation and Post-Graduation level. The Hans Foundation educat ion cheques were a lso distr ibuted among the

bene�ciaries.

thOn 27 August, 2017, the Chapter organized a Hemophilia Awareness Programme and Blood Donation Camp at the local Vijayanand Diagnostic Centre. This program was inaugurated by Dr. Surinder Singh Ghai (Civil Surgeon) and Mr. S. K. Jain (Chairman, Vijayanand Diagnostic Centre). Attending Chapter representative Mr. Ashish Jain (President, HSLC), Shri Vikas Goyal (General Secretary, HSLC), Shri Manodeep Kaushal and Ms. Puja Jain stated that the chapter keeps organizing various camps for Hemophilia Sufferers, from time to time.In this camp, 53 persons donated blood and were rightfully honoured. Present on the occasion, Dr. Jyotika Mahajan, member of the team of CMC Hospital, played a key role in the programme and the Civil Surgeon assured that the problems of Hemophilia sufferers will be resolved on priority basis.Dr. Joseph John (HOD Haematology, CMC Hospital) said that Hemophilia is a serious disorder related to blood, in which it is important for the patient to take special care of himself. Other dignitaries such as Mr. Narinder Sharma (Councillor), Mr. Jaspal Singh Bunty (President, Book Market), Mr. Sanjeev Choudhary, Mr. Anmolpreet Singh, Mr. Pankaj Chawla while addressing the gathering said that blood donation is the greatest gift one could offer.

Delhi Chapter

Bareilly Chapter

Ludhiana Chapter

North

Rally for Hemophilia Awareness

Difficul�es of Hemophilia sufferers will be resolved seriously

30th Annual General mee�ng

5

East

Bhojpur Chapter


The chapter representative held a discussion with Jeevika

Team ( Jeevik a is an init iat ive of Government of Bihar for

Poverty Alleviation by the Bihar Rural Livelihoods Promotion

Society, State Rural Livelihoods Mission.) A report is to be

submitted before the Bihar Govt. Discussions on modalities of identifying

undiagnosed Hemophilia patients by the health workers of Team

Jeevika are already going on in rural parts of Bihar and it is easy for

them to sensitize the masses on Hemophilia disorder.

th thFrom 5 to 6 August 2017, the Chapter's Youth & Women Group organized a two days Hemophilia awareness programme for the 26 newly enrolled Person/children with Hemophilia (P/CwHs) and their parents of Burdwan, Bankura, Bhirbhum and Purulia districts at its Care Centre, City Centre, Durgapur.Dignitaries present on the occasion were Mrs. Kasturi Sengupta (Jt. Director, Kalyani, Nadia District), Mr. Amitava Das (Commissioner, Durgapur Municipal Corporation, Durgapur), Mrs. Meera Hirani (Psychosocial Educator), Mr. Adimdan Mandal (I/C, City Centre, Police Station).Basics on Hemophilia care, self-infusion and physiotherapywere taught besides Psycho-social counselling for parents of P/CwHs. Patients were examined by Dr. Dibyendu Dey (HOD, Haematology Department), Dr. SS Dutta (HOD, Blood Bank) and Dr. Dipankar Sen (Orthopaedic Surgeon of the Mission Hospital, Durgapur).All the doctors and guests were overwhelmed by the chapter's unstinted service to the patients and they too assured all for possible cooperation and support for the cause.

Hemophilia Awareness Programme

Park (Opp. Rabindra Bhawan & Assam State Museum). On the occasion thirty-one underprivileged students, who suffer from Hemophilia were given educational scholarships by the dignitaries such as Chief Guest, Dr. A.C. Baishya (Executive Director, National Health Mission, Assam) and Guests of Honor Dr. Jina Bhattacharyya (HOD, Dept. of Hematology, GMCH) and Mr. Rajeev Ajitsariya (Secretary, Rotary Club – Guwahati Metro). The event was very well covered by the print and electronic media of the north-east.

thOn 16 July 2017, the Chapter and Department of Clinical Hematology, Gauhati Medical College & Hospital co-organized a SOL Scholarship Distribution programme at Dighalipukhuri

Guwahati Chapter

Durgapur Chapter

Save One Life Educa�onal Scholarships Distribu�on

6


Patna Chapter

The chapter has listed the following achievements in this quarter :

Hemophilia is included in Bihar Chief Minister's Relief Fund scheme.

thOn 13 September 2017, JPN International Airport, Patna has provided free space for Banners/Posters for Hemophilia Awareness. This has been made possible due to the hard work of Mr. Sanjeev Kumar Sinha.

thOn 25 August 2017, the Govt. of Bihar appointed a "Hemophilia Nodal Medical Officer" at the Hemophilia Centre, New Gardner Road Super Specialities Hospital, Income Tax Crossing, Patna with the following resources provided in the - 1st Phase, Pathologist

AIIMS, Patna to start Hemophilia Care: In the �rst phase, a genetic lab will be started. This has been achieved due to hard work of Chapter's Youth Group and Er. A K Verma.

Government of Bihar has appointed a Haematologist in Patna Medical College & Hospital (PMCH) especially for Hemophilia Patients.


This could be accomplished successfully with the joint efforts of Shri Shatrughan Sinha (Former Union Health Minister), Shri Nitish Kumar (Chief Minister, Bihar), Mr. Mangal Pandey (Health Minister, Bihar), Dr. S K Sinha and Mr. Kumar Shailendra.

Hemophilia Day Care & Physiotherapycentre opened in RIMS Ranchi

thOn 14 July 2017, Hon'ble Health Minister of Jharkhand Shri Ram Chandera Wansi inaugurated the Hemophilia Treatment Centre at RIIMS Ranchi in the presence of Dr. Jitu Charan Ram (MLA Kanke), Dr. BL Sherwal (Director, RIIMS Ranchi), Mr. Tripathi (Secretary, Health, Jharkhand) and Dr. Govind Jee Sahay (Professor & Project In-charge HTC, RIIMS, Ranchi).

The Chapter in co-ordination with the “Association of Physicians of India, Dibrugarh” “Indian Academy of andPaediatrics, Dibrugarh” organized a CME programme on Hemophilia treatment and management. The HODs, PG Students, Professors and Assistant Professors of all departments of AMCH, Dibrugarh were present in the CME programme. Dr. Prantar Chakarbarti (NRSMMC, Kolkata) and Mr. Mukesh Garodia (VP Development, HFI) were the Guest Speakers. Apart from the training of medicos, discussions and planning for Hemophilia Treatment Centre (HTC) at AMCH were also initiated. A new committee of doctors, PwHs and caregivers was also formed to lobby for continuous treatment support at AMCH.

Resident Doctor, Pathology Technicians (2), Staff Nurses (2) and Male attendants (2).

Ranchi Chapter

Tinsukia Chapter

Con�nuous Medical Educa�on

7


thOn 15 August, the chapter also organized a Hemophilia Awareness Camp in association with Rista an NGO of Tinsukia.

thOn 25 June 2017, the auspicious day of Ratha Yatra a new Hemophilia Society Shyamnagar was inaugurated in the kind presence of Hon'ble Mr. Arjun Singh (MLA) and Mr. Somnath Talukdar (Vice President, Bhatpara Municipality) at North 24 Parganas, Rabindra Bhawan, Shyamnagar, West Bengal.

Inauguration of the new HEMOPHILIA

society at Shyamnagar

Kolhapur Chapter

thOn 10 September 2017, the Chapter conducted its Annual General Meeting in the meeting hall at the Dabholkar Charitable Trust, Kolhapur. 86 members attended the meeting and it was presided by Dr. Arvind Manjrekar (President, HSKC). During the meeting some new Executive Members were elected and appointment of auditors was done. The Chapter's current and future plan of activities were discussed. It was informed that the Chapter is completing it's 25 years in 2018.

Annual General Mee�ng

West


Mumbai Chapter

ndOn 22 July 2017, the Chapter's Women Group conducted a meeting for women sufferers and carriers to share views, discuss various family and societal problems and economic rehabilitation. The women were also informed on the know-how of a disability certi�cate by Mr. Ajay Palande.

On 10th September 2017, the Chapter conducted its Annual General Meeting at Jivraj Mehta Auditorium, KEM Hospital. 128 participants including 90 PwHs and their parents participated in the meeting. Apart from the activities and �nancial reports, elections were also held and 14 members were elected as "New Executive Committee Members" for FY 2017-19.

Women’s Group Mee�ng

8


Women’s & Youth’s Group Anniversary

Annual General Mee�ng

The Youth & Women Group of the Chapter also took part in one of the major Ganpati Festivals “Lalbaug Cha Raja” of Mumbai and sensitized over 7000 visitors every day for 10 days on Hemophilia Disorder through interaction and presenting small video clips. Both the groups have decided to continue with this awareness drive in the future too.

Lal Baug Cha Raja Awareness Program

Inhibitor Screening Camp

Rajkot Chapter

thOn 30 July 2017, the Chapter organized Inhibitor Screening Camps simultaneously with its monthly Homeopathy cum Physiotherapy Camps at Rajkot and its sub centre Jamnagar. The camps were supported by Government Medical College, Jamnagar and Novo Nordisk. 118 PwHs with their parents took part in Rajkot whereas 65 did so in Jamnagar.


thOn 27 August 2017, the Chapter's Women and Youth Group th th celebrated their 4 & 6 Anniversary by cutting cakes at KEM

Hospital CVTC Hall. Over 120 Women & Youth Members took part in the event, conducted with support from Novo Nordisk. Medical sessions such as Nutrition & Exercise - by Dr. Pratap Patil, Dental Camp by Dr. Mehul Mehta, CD/PND by Dr. Shreemati Shetty (ICMR Department, KEM Hospital), Ocupational Therapy by Dr. Saurabh Phodkar and Hemophilia Rehabilitation by Dr. Alok Patil were also organized. A motivational session was conducted by Mrs. Vandana Kumar and she demonstrated Yoga steps for PwHs. Mr. Rakesh Bacha (Severe Hemophilia Patient) shared his life experiences and his selection for a BMC Job. The event was greatly successful and all the participants received tooth paste and tooth brush packs.

[The chapter has a fairly large number of members, many of whom stay 150-175 kms away. Therefore, to save their time and money, the Chapter has formed small self-help groups in Junagadh, Veraval, Jamnagar, Porbandar and Bhuj Kutch. These groups look after their local P/CwHs and with the support of the Chapter, lobby with Government Hospital authorities for continuous supply of AHF in their region].

The chapter supported the following 3 surgeries.

Date : 08-09-2017Patient Name : Chintan Patel

Age : 16Factor De�ciency : IX

Date : 16-07-2017 Patient Name : Vandanaben Chandrakantbhai Rudhani

Age : 26 Factor De�ciency : Von Willebrand

Date : 25-07-2017Patient Name : Ramjibhai Babubhai Dhorajiya

Age : 24Factor De�ciency : VIII

Surgery for Child Birth

Surgery for Tonsils

Con�nuous Medical Educa�on, CME

1

2

3

Surat Chapter

Surgery for Left leg Fracture

9


thOn 8 July 2017, the Chapter organized a CME programme at the Navsari Government Medical Hospital. Over 25 doctors were trained on Hemophilia Management by Dr. Nidhi Jain (Hematologist).

thOn 15 August 2017, the Chapter's Youth Group and Government Medical College & Hospital jointly Celebrated Independence Day at the later's premises. Dr. Vadel (Civil Superintendent), Dr. Vijay Shah (Hemophilia Specialist and HOD, Paediatrics), Dr. K.N Bhatt (HOD, Medicine) and Dr. Bhrambhatt (Dean, Civil College) were present among other doctors, staff, patients and their parents. One-year completion of Prophylaxis Treatment was celebrated and Dr. Vijay Shah spoke on the importance of Prophylaxis Treatment.

Independence Day Celebra�on

thOn 25 July 2017, Nepal's Ambassador also visited the Chapter and he was very

impressed by the society's work.


Thane Chapter

Bangalore Chapter

thOn 9 September 2017, the Chapter under the “The Hans Foundation Education Support” distributed scholarship cheques to its bene�ciaries during the Homeopathy Camp.

Inaugura�on of HEMOPHILIA Registry

The Hans Founda�on Scholarship

10


also present on the occasion. This web application will connect all the Hemophilia Treatment Centres of the state and will record the Demography, Treatment, Infusion, Physiotherapy logs etc. and details of the Children/Persons with Hemophilia. This will add great value in planning and providing quality

Calicut Chapter

thOn 15 August 2017, the Pain and Palliative Care, Rotary Club Cyber City and E Mould College's Social Wing jointly organized a picnic for the Chapter's 37 members including P/CwHs, Women and Youth members. Few patients and volunteers of the Pain and Palliative Care also went on the trip. The joy ride started from Government Medical College Kozhikode to NC Gardens, Kadalundi and Calicut Beach. Shri. Thottathil Raveendran, Mayor Calicut Corporation and P. Abdul Hameed Master, MLA, Vallikkunnu Mandalam were the Chief Guests. Furthermore, CwHs were also gifted with stationery.

Picnic on Independence Day

Fistulectomy (Anal �stula) was done successfully on a 26-year-old PwH at Government Medical College & Hospital, Kozhikode.

Surgery

South

Panjim (Earlier Goa), Kanyakumari and Mysore ndChapters were affiliated in the EC Meeting Held on 2

July 2017. Team Ananthpur has also been given recognition as a Self Help Group (SHG).Self Help Groups are entitled to HFI Projects and can participate in various HFI activities such as AGM, RCM, Women & Youth Group meetings.

Affiliation of New Chapters

The Hon'ble Minister of Health and Family Welfare, Karnataka, Shri Ramesh Kumar, inaugurated a web based Karnataka Hemophilia Registry (KHR) installed in Karnataka Data Centre. Dr. Shalini Rajneesh (Principal Secretary), Dr. Rathan U Kelkar (Mission Director, NHM), Shri Subodh Yadav (Commissioner), Dr. P.L Nataraj (Director, Health & Family Welfare) and Dr. Banakar (State Nodal Officer, Blood Cell) were


Hemophilia care across the state. The state government is also planning to provide a unique Hemophilia Identi�cation card to each Person with Hemophilia (PwH) in the state.

Ever yone dies one day, so why stress about your condition? The key to happiness is in your pocket and not with others. So, “live life to the fullest and be self-dependent”.

11


Annual General Meeting

Kanyakumari Chapter

thOn 16 July 2017, the Chapter conducted its Annual General Meeting in its premises at Punnai Nager, Nagercoil. 30 members with their families participated. General discussions on the chapter's growth & activities were held and an announcement of the chapter's affiliation was made.

Few members of the chapter also met Dr. Radhakrishnan (Dean)

and invited him for the Health Awareness Programme in September.

A Hemophilia trained Nurse Co-ordinator has been appointed at the Chapter office to assist patients in infusion and for seeking medical treatment at Government Medical College, Kozhikode. Factor Assay and Inhibitor Screening facilities are also available at the Department of Clinical Pathology, Government Medical College, Kozhikode.

Chapter Development

V.O. Bimal PwH member Calicut chapter

ACHIEVEMENTS of

PwH Member

He obtained his PhD in Computer Science from Karpagam University and has many scienti�c papers to his credit which are also indexed in Google Scholar.

Kunnamkulam Chapter

Coordina�on Commi�ee mee�ng


“The key to success is never considering yourself a sick child. Be a person with a good sense of humour and keep a positive view about life”. Consider Hemophilia a condition that blesses one with the care and support of one's family and one which saves you from your teacher’s thrashing at school. Try to stay happy even in ICUs. Say to yourself- “I am perfectly okay, I am me, not just a Hemophiliac and nothing can stop me!” Enjoy every second of your life. Everyone dies one day, so why stress about your condition? The key to happiness is in your pocket and not with others. So, “live life to the fullest and be self-dependent”.

Dr. Ajith Kumar V T (President, Calicut Chapter) was awarded as “The Best Doctor” by Sahayi Vadisalam, Medical College, Kozhikode. He also participa-ted in the State Level stake h o l d e r s ' w o r k s h o p o n “Comprehensive Life Cycle Approach to Disabilities due to Blood Related Disorders”. The workshop was inaugurated by

Hon'ble Health Minister, Smt. Shylaja Teacher. The Health Secretary and Dr. Alok Srivastava (from CMC Vellore) were also present in the meeting.

Our mind is powerful than our body

Associate Professor, Chinmaya Institute o f T e c h n o l o g y , Kannur.

The Hans Founda�on

Madurai Chapter

12


ndOn 2 September 2017, the PwHs with their families celebrated both the festivals in the Chapter's premises. Eminent lawyer Mr. A. Velayudhan inaugurated the function by lightening the traditional lamp. Entertainment programmes such as Flower Carpet, Spoon Race, Tug of War, Musical Chairs, Drawing Competition, Mehndi Competition, Thiruvathira Kali (Group Dance) and Music competitions were organized. Mr. Janachandran Master, Mr. Yousef Haji, Mrs. Shaylaja, Prof. N. N. Gokuldas, Mr. Raju Marar (famous temple drummer artist), Mr. Sathyanandan, Mr. E. Raghunandanan and Adv. Rema Raghunandanan supervised the programme. Mr. Jayadevan (Youth Leader cum Physiotherapist) was the Chief Coordinator. An excellent Onam Feast with 13 dishes and Desert (Payasam) was served on the traditional plantain leaf for all the participants and guests.

Onam & Eid Onam & Eid Fes�val 2017Fes�val 2017

It was unanimously resolved that the Office of the Coordination committee shall function in the Kannan Memorial Charitable Trust Building, Akkikavu. All steps shall be taken to organize a CME programme for doctors working in the government sector in the last week of October 2017. A state level Coordination Committee of the representatives of Youth and Women of all chapters shall be organized at Veli, Trivandrum. The representatives recognized the importance of forming three new chapters in Wayanad, Idukki, and Kayamkulam through the assistance of nearby chapters.

thOn 15 July 2017, the Coordination Committee of Hemophilia Chapters of Kerala held its meeting at the Kannan Memorial Charitable Trust. Fifteen representatives from six chapters participated and presented the activity report of their respective chapters.

“ Padikattugal " – A blood donation team joined the Diwali Celebrations of the Chapter members and distributed dresses

Pondicherry Chapter

thOn 12 July 2017, the Chapter organized SOL Cheque distribution programme and 39 bene�ciaries received the cheques from Mrs. Kannammal Balaji (Staff Nurse), EC Members and Mrs. Jayalakshmi (President SHWG). The programme was inaugurated by P/CwHs’ recitation of a prayer song composed by (a PwH).Anto Remo Rayan

and sweets to the Children with Hemophilia (CwH).

thOn 9 August 2017, Mr. Sanjeev Arora (Head, Resource Mobilization & Programmes) visited the Chapter and distributed education scholarship cheques among the bene�ciaries under The Hans Foundation's project "Educate a Child with Hemophilia".

In a meeting organized by the Chapter, Save One Life (SOL) cheques were distributed to the bene�ciaries by Dr. S. Shanmuga Sundaram (MD, DCH, Prof. of Paediatrics, Madurai Rajaji Hospital).


13


BHEL’s Heal-A-Soul Project

Mr. Jithin Sundar appreciated the activities of the Chapter and said that it was a great honor for to help the BHELneedy P/CwHs of the entire country. He said that has BHELbeen giving its yeoman services through CSR Projects and he would try to continue this project further. Thereafter,

Educational Project cheques were “The Hans Foundation”also distributed to 6 school children. The programme received good coverage by local press and television channels.

Salem Chapter

Visakhapatnam Chapter

Yoga Camp

Self-Infusion Training Programme

rdOn 23 July 2017, the Chapter organized a Yoga Camp in which 73 Chapter members with their relatives took part. The members of Vethathiri Maharishi's Valga Valamudan conducted the yoga session and taught simple yogic exercises to the participants. Preceding the session, Mr. Venkatasubramaniyan Ramarathnam educated them on Hemophilia and muscle bleeds.

thOn 30 July 2017, the Chapter's Youth Group conducted an infusion and self-infusion training programme for 15 frequent bleeders of Youth Group at Gayatri Clinic and Laboratory. The infusion technique was shown through video presentation and explained by Mr. M. Chandra Sekhar (President, Youth Group & Lab Technician) and Mr. K. Nithin (Secretary, Youth Group). Five of the PwHs with internal bleeds learnt the procedure and were able to successfully infuse themselves. Later Mr. K. Saibaba (Secretary, Chapter) explained the function of blood and veins and the importance of self-infusion.


thOn 8 August 2017, the Chapter organized an Anti-Hemophilia Factor (VIII & IX) distribution programme at “Thulasi Hall”, Hotel Surguru. Each of the 15 BPL PwHs were given 3000 IUS of AHF. Mr. Jithin Sundar (Executive Director, TBG, BHEL) was the Guest of Honor. He was accompanied by Mr. Rajasundar (AGM and Sector Head – Southern Region, TBG, BHEL, Hyderabad), Mr. Sarin (Deputy Manager/HR, TBG, BHEL, Noida) and Mr. Sanjeev Arora (Head- Resource Mobilization & Programmes, HFI, New Delhi). Mr. Benno Rayan, Secretary was the Master of the ceremony and he helped in conducting the programme smoothly.

The Hans Founda�onEducate a child with Hemophilia

thOn 27 August 2017, the Chapter organized a programme to distribute education scholarship cheques to 12 CwH bene�ciaries of the "The Hans Foundation – Educate a Child with Hemophilia" rd th project for the 3 & 4 quarter at Karunya High School premises. 38 participants including P/CwHs and volunteers attended the programme.


Warangal Chapter

14


EDITORIAL BOARD

Mr. Vikash C. GoyalVeteran Wg. Cdr. SS Roychoudhury

Mr. Mukesh Garodia

Mr. Pawan Madhukar

Hemophilia Chronicle is available on our website

www.hemophilia.in in PDF file format.

Hemophilia Federation (INDIA)Communication Department

A-128, Mohammadpur,

Behind Bhikaji Cama Place,

New Delhi - 110066

Tel: 011-26174020/26175791/26168152

Fax: 011-26177209

General email id : [email protected]

Website: www.hemophilia.in

Hemophilia without DisabilityChildren Free of Pain

Send your feedbacks, queries, news, articles to:

[email protected] or write to:

Content & Design

Development

Pawan Madhukar(Manager, Communication & IT)

A Journey with Hemophilia B

I would like to Introduce myself as Desh Deepak Sharma from Rupaspur Distt. Firozabad Uttar Pradesh (India) and I Share my journey of life with Haemophilia. I was born on 21st September 1996 and I am a registered PwH at Delhi Chapter. I belong to a Middle class Family. My father is a teacher, my mother is a House-Wife and I have two elder Sisters.

Me and my family was in utter shock when we came to know that I am a Hemophiliac and that too of the worst category i.e. a severe Hemophiliac B Factor <=1%. At that Time I was 10 years old. In spite of that I didn't give up my resolve against it. I started Doing Yoga and it really helped me a lot. Despite being a Hemophiliac, I Won 5 gold medals including 3 state Level and 2 national Level Yoga Championship.

My family always Motivated me a lot and specially my father Shri Madan Gopal Sharma, who is also 6-time Gold Medallist. He inspired me and always told me that if God made you “Rarest of Rare” then you must have to stand out and become an extra ordinary achiever. Other than Yoga, I also did Cycling every day. Approximately 16 km to and fro to reach my school and college which helped me a lot. I did my Post –Graduation in M.Sc. Chemistry and currently I am pursuing Bachelor of Education with Maths and Science.

Actually I want to share my experience with my friends with Hemophilia that with yoga I never had any need of Factor till 17 years of my age and only one day unfortunately I met with an accident and then from that day I started needing factor whenever any sort of pain occured in my body. It is uncommon to have frequent joint bleeds in Knee, elbow and shoulder as well

as internal/external bleeds.

As I have been through all the difficulties which a Person with Hemophilia suffers with, but I never gave up. I want to tell all my PwH friends that sometimes we face the circumstances which are not in our Hand but we should never stop trying. Most importantly one must adopt a good Habit of doing Yoga, Exercises and cycling etc. as it will immensely help us to stay �t and with that we can de�nitely achieve our goas of strong desire and determination.

15

BHARAT HEAVY ELECTRICAL LIMITED (BHEL) has extended the stproject “Prevention is Better than Cure” for CD/PND up to 31 March

2018. For reimbursement patients are required to submit original bills of

their Hospital, Travel, Food & Accomodation through their local chapters to HFI. The maximum reimbursements that can be done is

as per the details given below.

All India Institute of Medical Sciences (AIIMS) - New Delhi

Amount

Cost of Carrier Detection Test 2000

Cost of to & fro traveling for two persons from their city to the testing centre

3000

Average cost of Lodging/Boarding 3000

Total support for one CD Test 8000

KEM Hospital - Mumbai Amount



3000



CMC - Vellore Amount



3000



Cost of Prenatal Diagnosis Test 2000


4500


Total support for one PND Test 10500



4500





4500



A CD/PND bene�ciary being reimbursed by Sh. E. Raghunandanan (Chapter Keyperson, Kunnamkulam Chapter)

SUPPORT FOR CARRIER DETECTION /PRENATAL DIAGNOSIS (CD/PND)

Carrier Detection & Pre-Natal Diagnosis Cost Break Up


Registered with Registrar of Newspapers for India Vide R.N.I No. DELBIL/2014/56726

Printed & Published by Wg. Cdr. (Retd.) SS Roychoudhury for and on behalf of Hemophilia Federation (India)at A-128, Mohammadpur, Behind Bhikaji Cama Place, New Delhi - 110066

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