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HemophiliaChronicle

Hemophilia without Disability, Children Free of Pain

A quarterly bulletin on Hemophilia

VOLUME: 1, ISSUE: 04 | JAN. - MAR. 2018

Free EditionN o t t o b e S o l d

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

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For Northern RegionPatient Education ProgrammeJind, Haryana

For Eastern RegionMeeting with Minister of State,MOH&FW

For Western RegionFree Major Surgery done atHamidia Hospital, Bhopal

For Southern RegionTesting facilities available in Mysore

MSK Project Meetingof Physiotherapists | Phase 3

Obituaries

Regional Activities

A boy with Hemophilia

expressing gratitude to

Dr. Alison (From UK)

for being there for them.

Photo Courtesy : Mumbai Chapter

A boy with Hemophilia

expressing gratitude to

Dr. Alison (From UK)

for being there for them.

Regional ActivitiesHEMOPHILIA CHRONICLE VOLUME: 1, ISSUE: 04 | JAN. - MAR. 2018

Northern Region

social worker of Jind) while addressing the gathering said that the service of disabled people is the true service of the society and he will always stand with Jind Chapter for such good work.

The programme was also attended by Mr. Vinay Manchanda (RCC North, HFI) and Mrs. Gurmeet Khanna (Vice President (Finance)), HFI. For the immediate availability of Hemophilia treatment and the Factors, a 10-point demand letter was given as part of “Hemophilia Welfare Scheme" to Mr. Rajesh Goyal and he was urged to get it implemented with immediate effect from the Haryana Government. He was apprised that it will give direct benefit to 600 Hemophilia families of Haryana.

The Deputy CMO Jind Hospital, Mr. Palaram was present in the programme and he spoke about the symptoms of Hemophilia. A copy of the disability bill was given to him and he was urged to expedite issuance of disability certificates to all the Hemophilia patients of the district. Dr. J K Mann (Blood Bank In charge) was also present and he spoke on the symptoms and treatment of Hemophilia.

Mr. Ashutosh Sharma (President of the Chapter) requested Mr. Rajesh Goel for Hemophilia medicines. After hearing the pain of the disabled, Mr. Rajesh Goel assured that he will soon meet the Chief Minister and Health Minister to get relief for the patients. He assured the parents that he is always there for them.

He concluded saying "Challenges that come in the life of man should be met with stubbornness. With the flight of courage, man can live life in contrast to opposite situations." The program received very good coverage in the local newspapers.

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Delhi Chapter

Jind Chapter

Udaipur Chapter

thOn 20 January 2018, the Delhi Chapter organized a meeting with support from Novo Nordisk India involving various Doctors of Delhi Government Hospitals at India International Centre.

The theme of the meeting was Hemophilia from Disability to Cure. Different topics related to Hemophilia such as “Challenges in Diagnosis and Management, Role of Prophylaxis, Home Therapy, Emerging therapies in Hemophilia and Management of Inhibitors in Hemophilia” were discussed by the participating Doctors.

th On 18 March 2018, Sunday, a Patient Education Pogram was organized by the Chapter to create Hemophilia Awareness Month at Hotel Dalamwala, Jind, Haryana. In this program, information about Hemophilia and its treatment was explained in detail to the participants. Mr. Rajesh Goyal (Personal Secretary to Chief Minister of Haryana) was the Chief Guest.

Presiding the program, Shri Narendra Kaushik (a famous

The chapter organized a Hemophilia Awareness programme for the patients of Bhilwara District, Rajasthan at MB Hospital. Dr. Gaur (HOD, MB Hospital), paramedics, few social workers and nearly 50 PwHs with their parents participated in the programme.

HEMOPHILIA CHRONICLE VOLUME: 1, ISSUE: 04 | JAN. - MAR. 2018

Annual General MeetingthOn 11 March 2018, the Chapter held a programme to mark

World Hemophilia Day celebration and its Annual General Meeting at Mini Auditorium, College of Nursing, AIIMS, Bhubaneswar.

Various scientific sessions were conducted to educate the participants on Inhibitors, Prophylaxis, CD/PND and Current Scenario of Hemophilia Care in Odisha.

Eminent doctors of AIIMS, Bhubaneswar were Dr. B. Gitanjali (Director), Dr. Ashok Kumar Praharaj (Principal), Dr. Vishnu Prasad Patra (HoD, Orthopaedics), Dr. Bhagirathi Dwibedi (HoD, Paediatrics), Dr. Sonali Mohapatra (HoD, Haematology) and Dr. Ashutosh Panigrahi (Haematology Department). Dr. Binod Kumar Mishra (Former Special Secretary, Govt. of Odisha, Health & FW Department) was also present on the occasion.

thOn 11 Feb. 2018, the Chapter arranged a pleasure trip and picnic for C/PwHs & their family members to Anand Park, City Centre, Durgapur. Programme started with basic physical exercises followed by joy rides on toy train, moonwalker and wonderland etc. Children took part in Sit and Draw quiz competition whereas women played musical chair.

thOn 28 January 2018, the Chapter held its Annual General Meeting at Pragjyotish High School in Pan Bazar, Guwahati. 40 Children with Hemophilia received scholarships under the Save One Life grant and 17 Children with Hemophilia received The HANS Foundation scholarship cheques. The new Executive Committee of Chapter was also elected in the meeting.

Mr. Muk e s h Ga r od ia (VP Development, HFI) has been nominated in a committee for RESEARCH ON DISABILITY, constituted by Government of Assam for three years under DISABILITIES ACT OF 2016.

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Eastern Region

Bhubaneswar Chapter

Durgapur Chapter

Patna Chapter

Guwahati Chapter

SOL Cheque Distribution Programme

thOn 16 January 2018, Mr. Shatrughan Sinha provided an Ambulance to NGR Hospital.

thOn 19 January 2018, Dr. S K Sinha and Mr. Paradeep Gupta (Directors of Hemophilia Hospital) met with Hon'ble Union Health Minister Mr. J P Nadda at AIIMS Patna and discussed about Haemophilia. Mr Nadda assured all support to HFI and PwHs and also assured his participation in Hemophilia Programme. Hon'ble Health minister of Bihar Mr. Mangal Pandey was also present in the meeting.

thOn 27 January 2018, the Chapter's Women Group organized a scholarship cheque distribution programme at Hemophilia Hospital Patna.

Guests from Inner Wheel Women Club Patna Mrs. Sangita Verma (President), Mrs. Sandhya Sarkar (Secretary), and Mrs. Usha Sinha (Treasurer) distributed the s c h o l a r s h i p c h e q u e s t o 1 7 beneficiaries.


Continuous Medical Education (CME)

The chapter organized a CME at PMCH, Dhanbad, Jharkhand. Dr. Maitreyee Bhattacharya (HOD Haematology IHTM, Kolkata) was the Chief Speaker of the workshop in which Dr. Sandyal (Superintendent, PMCH), Dr. Biswas (Principal, PMCH) and 75 doctors participated.

thOn 18 March 2018, the Chapter conducted a felicitation programme to honor Dr. Pankaj M. Shah (Medical Oncologist & VP Gujarat Cancer Society) as he will be given the

ndprestigious Padma Shri award on 2 April 2018 in Delhi for his contribution to medical oncology. He retired as Director of Gujarat Cancer Research Institute and has been working for cancer treatment and de-addiction awareness for 43 years. He guided the participants and motivated them for active advocacy for Hemophilia. Mr. M. A Husseni (President, HSAC) and Mr.Brijesh Modi (VPD, HSAC) felicitated Dr. Shah by a flower Bouquet, Shawl and Memento. Ms. Nabila Husseni felicitated Mrs. Pravina Shah (Nephrologist- serving in Gujarat Kidney Foundation) by a bouquet of flower. Dr. Mahendra Vyas and Dr. Akil Qureshi were felicitated by a bouquet of flowers by Mr. Nakrani and Mrs. Mina Modi respectively.

The Hans foundation scholarships were also distributed to the beneficiaries by the Hon'ble guests. Mr. Dhanish Patel, member of HSAC, donated Rs.25000/- to the chapter. EC of youth and women group along with chapter EC members took red tie challenge as awareness for the month of bleeding disorders.

th The Chapter celebrated International Women's Day on 8March 2018 at its premises by conducting a Dental camp for all women. Dr. Akil Qureshi (MDS Civil Hospital, Ahmedabad) examined them and suggested treatments at his clinic. The women group also celebrated the day by giving each other roses and having snacks together.

Hemophilia Day Care Center was inaugurated at Ahmednagar Civil Hospital. The chapter representatives had a detailed discussion with Day Care Medical Officer Dr. Bharati Dhambore and her staff.

Continuous Medical Education (CME)5thOn 2 February 2018, the Chapter organized a CME in

association with Kamalnayan Bajaj Hospital at Hotel Menor, Kranti Chowk, Aurangabad. The speakers were Dr. Venkatesh Ekbote (MD, DM Hematology) and Dr. Alka Ekbote (MD, PDF Clinical Genetics).

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Ranchi Chapter

Ahmedabad Chapter

Ahmednagar Chapter

Aurangabad Chapter

Western Region


Free operation done at the Hamidia Hospital Bhopal. Private hospital had demanded Rs. 5 lakh!

Arshad Kazi, aged 19 years, resident of Rewa was operated in one of the best Bone Disease Department at Hamidia Hospital of Bhopal. He was suffering from Hemophilia and is currently studying as a regular student in Government Homeopathic Medicine College. Arshad's right foot had a bone fracture. Various private hospitals were consulted as he was also a Hemophilia patient there was fear of excessive bleeding during operation. Therefore, large quantity of Factor VIII was required to prevent bleeding. The private hospitals quoted about Rs. 5 lakhs since the Factors are very costly and also due to high operation cost.

This complicated operation of the said patient was done for stfree on 21 February 2018 by senior and experienced

professor (Orthopaedics Department of Hamidia Hospital) Dr. Deepak S. Marawi and his trained team. The bones were joined by plating and in order to prevent bleeding due to Hemophilia, large quantity of Factor VIII was provided free by the Hospital Management and Hemophilia Federation (India).

The team of doctors were led by the efficient Dr. Deepak S. Marawi (Senior Orthopaedic Specialist) who was assisted by Dr. Aditya Agarwal (Anesthesia), Dr. Tripti Vatsalya and Dr. R.K Nigam (Professor of Pathology). The patient recovered completely and remained healthy even after having a very complex operation. He was soon discharged from the hospital.

Earlier too, surgery of complex operations / cases of bone linking were done successfully by the trained team of Dr. Deepak S. Marawi. All the operations related to Orthopaedics are done by him using modern methods, which directly benefits the poor, destitute, needy and other people who come to the hospital.

thOn 14 March 2018, the Chapter organized a Hemophilia Awareness Camp in industrial area.

th On 10 March 2018, on the occasion of International Women's Day, chapter organized a free check-up camp for its women members at Dabholkar Charitable Trust.

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Bhopal Chapter

Kolhapur Chapter

Mumbai Chapter

stOn 1 March 2018, the Chapter organized a get together programme with Dr. Alison and her Husband Dr. Paul at

thWadala Five Garden. On 7 March 2018, Dr. Alison also visited Hemophilia “Day Care Center” at KEM Hospital, Mumbai.

thOn 17 March 2018, the Chapter celebrated Women's Day with 37 women and children. Ms. Rehana M. Changi, a corporate trainer in human psychology, doing her PHD delivered her talk on women empowerment.


Youth & Women Group CampthOn 4 February 2018, the Chapter's Women and Youth

Group jointly organized a one-day motivational camp at Yusuf Meherali Center. 33 Members participated in the camp and learned skills like poetry, oil extraction, soap making etc. Some of the students of Vidya Vikas Universal College were also present at the center and the members sensitized them on the Hemophilia Disorder.

thOn 12 February 2018, Arya Vidya Mandir School, Bandra Kurla Complex organized “Arya Prabha Diwas” and they invited 35 CwHs between the age of 8 to 14 years along with their parents. It was a joyous moment for the CwHs as they enjoyed various games, songs and participated in dances organized by the students of AVM School. Each one of them also received Blankets, Smiley Balls and Color Boxes as gifts.

th thOn 24 & 25 February 2018, the Chapter put up a stall at Bhavans College Yogyana Festival to create awareness among the participants and raise funds. Master Siddhes Chikne and Heet Joshi sensitized the visitors on Hemophilia whereas Mrs. Indira Nair made a detailed presentation on Hemophilia.

Awareness Programmes

TATA Mumbai Marathon stOn 21 January 2018, 25 Chapter members took part in the

famous TATA Mumbai Marathon near CSMT under the Champions with Disability category (2.4 km) with support of IKC (International Knitware Company). Many national and international personalities including celebrities, corporate, students and other NGO's took part in the marathon. In addition to spreading awareness on Hemophilia, the chapter also raised Rs.2,90,000/-. Hindustan Times and Times of India covered the event.

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Panji Chapter

Pune Chapter

Goa MarathonthOn 4 February 2018, 25 chapter members including its

PwHs took part in Goa Marathon held at Panaji Campal to create awareness on Hemophilia. Mr. Aditya Myannavara (PwH member) completed 5 Km dream run on wheel chair and was awarded a trophy.

Women's Day CelebrationthOn 11 March 2018, the Chapter's Women Group

participated in All Women Power Rally organized by Maharashtra Times and Pune newspaper. Thousands of women participated in the bike rally and they were sensitized on Hemophilia. Huge response was received and many women assured to further spread awareness on Hemophilia in their social groups.


thOn 10 March 2018, the Chapter organized a Psychological Interactive Session for CwHs and their parents. 12 CwHs between the age group of 5 to 10 years were present in the

session. Parents were taught treatment and management of Hemophilia. Children were motivated and were given guidance to deal with disability. Story books were also donated to all CwHs.

International Women's Day Celebrationth thFrom 5 – 8 March 2018, the Chapter organized various

activities for the women caregivers of the Hemophilia community to celebrate Women's Day. Dietician Dr. Alpa Tanna informed on nutrition and importance of exercises to lead a healthy life style and Dr. Minushree Rakholiya informed on naturopathy for healthy living. Dr. Tapan Pandya familiarized the participants on Sujok therapy. “Sujok” is a

Awareness at Marathon

thOn 18 February 2018, the chapter participated in Rajkot Marathon 2018 with an aim to create awareness on Hemophilia. It was one of the largest Marathon with 60,000 participants.

Korean word formed by joining 'Su' meaning hand and 'Jok' meaning feet. Sujok therapy basically is the treatment through Acupuncture & Acupressure with a focus on hands and feet. Women who participated in 10/21 Km Marathon and Surya Namaskar were felicitated on the occasion. The event was widely covered in local print media.

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th On 14 January, the Chapter celebrated Makar Sankranti festival and Haldi Kumkum traditional programme in which the members exchanged gifts with each other.

thOn 24 January, the Chapter organized its' Women Group meeting to discuss future plans. Money/Dividend was also distributed among the members of Bachat Gat scheme.

Rajkot Chapter

thOn 28 February 2018, Dr. Yogesh Parikh (HOD Paediatric Department, Children Hospital & Medical College, Rajkot) selected 19 Children with Hemophilia (CwHs) for Prophylactic Treatment. During the programme he explained Treatment, Screening and benefits of Prophylaxis through power-point presentation.

Prophylactic Treatment


thOn 8 March 2018, the Chapter's Women Group Celebrated Women's Day at New Civil Hospital, Surat. Dr. Ragini (Gynaecologist), Dr. Harehsbhai and Mrs. Urvashi (Counsellor, Day Care Center) were present. Participants were educated on Women's Cancer, Prophylaxis, Carrier Diagnosis and PND Testing. Blood Donation camp was also organized and 50 Units of blood was collected.

Patient Education Programme

Store and R.M.O, New Civil Hospital, Surat) was also present in the programme.

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Surat Chapter

thOn 14 March 2018, the Chapter's Women & Youth Group jointly organized the Patient Education and Awareness Programme at New Civil Hospital, Surat. Nearly 80 PwHs and 70 doctors took part. The dignitaries present on the dais were Dr. Kanjaksha Ghosh (Former President, HFI), Dr. M. Vadel (Medical Superintendent, New Civil Hospital, Surat), Dr. Vijay Shah (HOD Paediatrics and In-Charge, Hemophilia Care Center, Surat), Dr. Maulik Patel (Physiotherapist), Mr. Anilbhai Patel (Essar Foundation India) and Mr. Deepak Sain (RCS West). During the programme Life Time Achievement Award was handed to Mr. Mukeshbhai Marchawala.

th On 13 January 2018, Gujarat Health Minister, Shri Kumarbhai Kanani and MLA Shri Harshbhai Sangavi visited Hemophilia Care Centre at Surat Government New Civil Hospital.

thOn 17 March 2018, the Chapter organized a Hemophilia Awareness programme for the 45 members of Central Medical Store Staff at New Civil Hospital, Surat. Dr. Vijay Shah increased the knowledge of participants through a presentation on Hemophilia. Dr. Ketan Nayak (HOD Medical

rdOn 3 February 2018, the Chapter's representative met Health Minister of Gujarat Shri Kumarbhai Kanani and apprised him about Hemophilia and problems of Hemophiliacs.

Successful Surgery

Mr. Vajubhai Govindbhai Makwana, aged 58 years from Junagadh had under-gone successful surgery of Hip Replacement.


higher education.

Monthly MeetingthOn 25 March 2018, the Chapter organized its monthly

meeting at Kasturba Gandhi Memorial Hall in which 150 members were present. A team of doctors from Coimbatore Medical College & Hospital were invited to educate the participants on Hemophilia care and management. Dr. Usha (MD, Nodal Officer, Coimbatore Medical College & Hospital) was requested to provide a separate Doctor and Nurse for Hemophilia Treatment Center. The request was accepted by Dr. Usha.

A Life SavedstOn 1 January 2018, Chapter's PwH member, S. Mohan

Prasad (Hemophilia A) met with a road accident. He got a head injury and fracture in left femur. He was admitted in KMCH Hospital, Coimbatore and 45000 IUS of Factor VIII support was provided for his operation. He was saved by the Factor support received on right time by the Chapter.

Physiotherapy Center Upgradedth On 19 March 2018, the chapter renovated its physiotherapy

center and fixed new equipment for occupational therapy. Many C/PwHs are now regularly visiting the center to exercise.

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SOL Payments Distribution - January

Through SOL's MEG Grant, financial support was given to the below members.

Mohan Kumar purchased a four wheeler automobile for his vegetable sales business with the MEG Grant.

Premanandham expanded his Cyber Café and electrical accessories shop with the MEG Grant.

Thiyagarajan bought a cow to earn his livelihood by selling the cow's milk.


thOn 19 March 2018, the Chapter celebrated completion of 5 years of Hemophilia Day Care Centre at Thane Civil Hospital. On the occasion cake was cut and gratitude shown towards Dr. Balakrishna Khandale (Treating Doctor), Dr. Meghana Gaikwad (Treating Doctor), Dr. Megha Nalawade (Physiotherapist), Sister Manisha Shewale (Nurse), Mr. Santosh Dubal (Counsellor), Mr. Ganesh Sonule (Coordinator), Mrs. Tanvi Jadav and Mrs. Swarupra Jadav for treatment, guidance and continuous support to Hemophilia patients.

thOn 12 February 2018, the Chapter organized a cheque distribution programme at its premises.

Rusilabi CM (Treasurer and Physiotherapist) distributed the

The Hans Foundation

Surgery

A 61-year-old male with severe Hemophilia, underwent successful surgery for fracture of the shaft of right side femur at Government Medical College, Kozhikode with support of WFH Humanitarian Aid.

th On 6 January 2018, the first meeting of Women's Group was held. Nearly 30 women members including mothers of newly identified C/PwHs participated and shared their views and experiences pertaining to Hemophilia. One of the SOL – MEG beneficiary explained the Micro Enterprise Grant (MEG) programme to participants and how it can help families in financial crisis.

SOL Educational Scholarship

Under the SOL's educational project, the Chapter supported 50 PwH beneficiaries by giving sponsorship cheques and 6 PwHs were given further scholarship support to continue

“The Hans Foundation” educational scholarship among the beneficiaries and guided them.

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Thane Chapter

Southern Region

Calicut Chapter

Coimbatore Chapter

st On 1 February 2018, the Chapter along with Govt. District Hospital, Tirur, Malappuram and HTC Aluva organized an Inhibitor Screening and Self Infusion Camp with support from . Dr. Javed Anees P (PMR Novo Nordisk IndiaConsultant, District Hospital, Tirur) addressed the gathering of nearly 200 participants. 'Varam' – a support group for differently abled persons of the region donated a 300 L refrigerator to District Hospital, Tirur for storing CFCs. The event was widely covered in the major local newspapers.

Hubli Chapter

Kunnamkulam Chapter

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thOn 26 January 2018, the Chapter's Women Group members and children celebrated Republic Day in the company of the famous singer Dr. S.P Balasubramanian.

Physical Assessment Camp

thOn 30 March 2018, the Chapter organized a Physical Assessment Camp at Kannan Memorial Charitable Trust Building, Akkikavu to identify PwHs absolutely in need of Physiotherapy for correction of their physical disabilities.

32 C/PwHs attended the camp which was jointly supervised by Dr. K. Jithu (Orthopaedic Surgeon, Thaluk Hospital Chelakkara) and Shri. R. Jayadevan (Physiotherapist and a PwH).

It was also decided to organize a Summer Physiotherapy st stCamp from 1 April to 31 May 2018 under the supervision of

Dr. K. Jithu and Physiotherapists, Mr. Babu K M and Jayadevan R.

Factor Support

rdOn 23 March 2018, a Hemophilia Patient Mainuddin was supported with 6000 IUS of Factor IX.

Hemophilia Rehabilitation Camp 2018thOn 25 March 2018, Gangavati and Hubli-Dharwad

Chapter jointly organized a Hemophilia Rehabilitation Camp under the patronage of Karnataka State Health & Family Welfare Department and National Health Mission at Raashi Farm House, behind SDM Dental Hospital, Ittigati Road, Sattur, Dharwad. Over 200 PwHs with their families

Awareness Programme

nd On 2 February 2018, the Chapter organized a Hemophilia Awareness Programme at KLE International School.

and more than 40 doctors of North Karnataka District participated in the camp. Dr. Banakar (Nodal Officer & Director of Health Department, Govt. of Karnataka), Mr. Premroop Alva (RCC South, HFI) and Dr. Suresh Hanagavadi (President, Davangere Chapter) were present as distinguished guests. The patients and their families requested the participating health officials for basic treatment facilities such as Free Factor Support, Physiotherapy and Rehabilitation etc. Dr. Banakar assured to make all this happen in all Government General Hospitals of Karnataka as soon as possible. After the meeting all the PwHs were given Government ID Cards for availing benefits of Government facilities. Activities like Board Games and Swimming were also arranged for the C/PwHs.

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The chapter marked the beginning of New Year by thanking all the persons who provided their unstinted support to Hemophilia sufferers. Nearly 300 'Thank You Bookmarks' with calendar prints were gifted to treating doctors, teachers and employers of C/PwHs by the parents, youth group, women group and EC members.

th On 4 February 2018, Dr. Banakar (Nodal Officer, National Health Mission, Govt. of Karnataka) visited Udupi District Hospital. Dr. Annamma Kurien and Mrs. Sulochana briefed him about Chapter's activities. They also discussed availing & utilization of Government's Factor Concentrates by PwHs.

Following Patients were supported with Humanitarian Aid of WFH received Free through HFI

Ÿ Mohammed Nihar (Hemophilia B) suffered GI Bleed and recurrent right knee joint Hemarthorsis.

Ÿ Mr. Anoop (Hemophilia A, Kannur Chapter Patient) was admitted with Hematuria. He was investigated in urology department and underwent bilateral DJ Stent.

Ÿ Thejas (Hemophilia A) admitted with GI Bleed.

Ÿ Mr. Hamza (VWD) admitted with Hemorthrosis. He had stiff joints, was on bedrest and POP. He was supported w i th VWD Fac to r. Now recovered we l l w i th Physiotherapy.

Ÿ Mr. Vinayaka Prabhu (Factor V deficient) was admitted with huge Hematoma in the thigh. He was treated with Blood products and Physiotherapy.

A total of 30 PwHs were treated in Kasturba Hospital associated with the Chapter and Factor support was also provided.

th On 13 January 2018, Dr. P. Nalini organized a meeting on Prophylaxis with CwHs, their parents, EC Members, Women and Youth Groups. They acorded a warm welcome Dr. Devila Sahu (Founder Mumbai Chapter). Dr. Devila interacted with the patients and taught them some basic exercises by performing herself. She was honored with a Shawl, Memento and a Calendar.

Testing Facilities available in MysorethOn 18 March 2018, the Mysore Chapter President Dr. S. K.

Mittal was invited to see the equipment and working of testing machines installed at K R Hospital.

Thanks to Government of Karnataka and National Health Mission, the situation of diagnostic facilities is gradually beginning to improve. Earlier, the testing facilities were only available in Bangalore for the PwHs of entire state of Karnataka. They used to travel from far off places to

Bangalore, spending close to Rs. 7,000-10,000/- for their diagnosis. As a result, the cost and distance factor was preventing patients from periodical check-up.

Now a great hope and service to haemophilia patients is on the horizon. Mysore being the center of many districts has been selected as a second destination for identification of bleeding disorder patients. While many hospitals are reeling with shortage of space, Dr. Chandrasekhar (Medical Superintendent, KR District Hospital, part of Mysore Medical College) took the initiative and provided an appropriate and easily accessible place in pathology wing of the Hospital.

Manipal Chapter

Mysore Chapter

Pondicherry Chapter

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Parents Empowering Parents (PEP)thOn 25 January 2018, the PEP – Parent educator workshop

was jointly organized by Empowering Minds Society for Research & Development(EM), New Delhi and Hemophilia Federation (India) with support from Novo Nordisk Foundation, Switzerland. 15 Parents of PwHs from Tamil Nadu and 3 from Pondicherry Chapter participated in the workshop.

Annual General Meeting

th rdOn 28 January 2018, the Chapter held its 23 Annual General Meeting at Hotel Surguru, Pondicherry. 200 members attended the AGM. It was reported that the Factor situation in the chapter is very good, thanks to the prompt distribution of WFH's Humanitarian Aid by Hemophilia Federation (India). 19 CwHs, some from JIPMER and some from CMC Vellore are on regular Prophylaxis. Nearly 40 school children are receiving educational scholarships, including 4 from SOL and 6 from the “The Hans Foundation”. Mr. Benno Ryan announced that Mr. Balaji has donated 3 Wheel Chairs to Villupuram Medical College, Hospital Casualty.

Hemophilia Care Meeting

rd thFrom 3 – 4 February 2018, the Hematology Department of thCMC, Vellore organized the 5 Hemophilia Care Meeting in

New Delhi with support of World Federation of Hemophilia and . Dr. P. Nalini (President, Pondicherry Novo NordiskChapter) had participated in the two-day meeting.

Women's Day CelebrationthOn 11 March 2018, the Chapter and Nalinam Self Help

Group jointly celebrated International Women's Day at Botanical Garden. The event was supervised by Mrs. Jayalakshmi. Women and Children sang songs, danced,

played various games and had lot of fun.

Parents Empowering Parents (PEP)

"Parents are capable of being the primary teachers and nurturers for their own children"

thFollowing the above statement, on 18 March 2018, the Chapter conducted PEP training programme for the parents of its members. The programme was attended by parents of 36 members who were educated by Mr. Murugeshan (VP, HSSC) on Bleeding Mechanism, bringing up children, time management, creating positive environment, emotional and behav ioura l ou tcome e tc . Mr. Natara j and Mr. Venkatasubramanian also assisted Mr. Murugeshan in imparting the training by addressing the doubts of the parents.

The outcome of the training was very pleasing as there was clear reflection of positive attitude in some of the parents. They had realized that there are other better ways to approach children to make their lives better and they expressed their confidence in raising them.

Salem Chapter

Vijayawada Chapter

th thOn 7 January 2018, the Chapter held its 24 Annual General Meeting at its Hemophilia Care Centre. 216 members including P/CwHs and their families attended the meeting with enthusiasm.

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Youth Group Picnic

thOn 26 January 2018, on the occasion of Republic Day, the Chapter's Youth Group conducted Picnic at VUDA Park for all their members. They played games such as Volley Ball, Treasure Hunt, Quiz, Musical Ball etc. which helped them forget their pains and they felt the joy. Youth leaders Mr. Chandra Sekhar, Mr. Nithin Kumar and Mr. Aravind Nikhil conducted the picnic successfully.

activities such as speedly walking, musical ball, quiz games etc. were carried out to de-stress the caregivers. Women leaders Ms. Ramani, Ms. Leela and Ms. Bharathi conducted the picnic successfully.

Women Group Picnic

thOn 18 February 2018, the Chapter's Women Group organized picnic for mothers and wives of C/PwHs. Fun filled

ndThe cheques of 2 quarter Save One Life (SOL) Scholarshipwere also distributed among the beneficiaries.

The Hans Foundation Scholarshipst ndFrom 1 to 2 March 2018, the Chapter organized a

programme and distributed The Hans Foundation th Educational Scholarship Cheques of 4 Quarter among 9

beneficiaries who attended the programme with their families.

Visakhapatnam Chapter

The Chapter arranged a joint assessment programme for 21 Factor VIII deficient CwHs below 17 years of age under the MSK Project. Dr. P. V. Ravi Shankar (Physiotherapist) did the joint assessment at his clinic and Mr. K. Arvind Nikhil (PwH) recorded the data.

The Hans Foundation Scholarship DistributionstOn 21 January 2018, the Chapter organized a programme

to distribute scholarship cheques to 12 beneficiaries under The Hans Foundation project – “Educate a Child with Hemophilia”. 36 participants attended the meeting. Dr. Chandrashekar Valapadasu (Pr incipal , Kakat iya Government Medical College, Warangal) was the Chief Guest and he appreciated the role of Hemophilia Federation (India) for supporting the poor hemophiliacs in their education and treatment. Local print media covered the event.

Warangal Chapter

We express our deep sorrow on the sad demise of our beloved friends. May their soul rest in Peace and may God give strength to their family members for this unbearable loss.

Late Master NavneetMember of Calicut ChapterAged 5, Severe Hemophilia A

Patient with Inhibitor(Died on 28.01.2018 due to

serious Intracranial Haemorrhage.)

Late Mr. VibindasMember of Kunnamkulam Chapter,

Aged 16 years(Died on 22.02.2018 due to IC

Bleed.)

Late Miss Chokka AnjaliMember of Vijayawada Chapter,Von Willibrand Disease (Type III)

Aged 8 years(Died on 08.03.2018 due to massive

GI bleed and Epistaxis.)

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OBITUARIES

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A meeting of physiotherapists was held in January this year at Leonia Resorts, Hyderabad as part of the 3 year long HFI -NNHF sponsored MSK Project. The project is in the Phase 3 now. Presently, dedicated physiotherapists from 15 HTCs across the country are studying the Efficacy of Physiotherapy Treatment Protocols under the lead of Dr. Pamela Narayan, Physiotherapist from Hyderabad.

Meeting of Physiotherapists at Leonia Resorts,Hyderabad, Jan 13 - 14, 2018Meeting of Physiotherapists at Leonia Resorts,Hyderabad, Jan 13 - 14, 2018

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