Sponsor blood units to poor patients with hemophilia by Hemophilia Federation (India)

1 beneficiary was supported through this program in Delhi

Patients were provided Anti Hemophilic Factor(AHF) We were able to manage bleeding episode of a severe Hemophilia A Patient with the AHF support.

Abhilash Dalai, a 41 years old Hemophilia patient with severe Factor VIII deficiency. Due to recurring bleeding in both knee and non availability of Anti Hemophilic Factor in his early age, he became 80 % handicapped(Bilateral knee Arthropathy). Now he walks with the support of Crutches. Normally he has a bleeding episode of 2-3 times in a month and he has to take AHF VIII during his bleeds every time which is very expensive. Due to right side hamstring bleed, HFI supported him with Factor VIII. This support has enabled him to avoid pain and carry on with his day to day activities instead of being bedridden.

One patient/beneficiaries from Cherthala, Alappuzha, Kerala, benefitted from this programme. She and her family members benefitted from this programme. She was provided with free life saving Anti hemophilic factor which enabled her to stop the bleeds immediately The AHF was sent by courier which was infused by her treating doctor and this prevented her from possible disability/death.

Since 1983 Hemophilia Federation (India) HFI, is the only national umbrella organization in India, working for the welfare of People with Hemophilia (PWH) . Popularly known as HFI, the organization is based in Delhi and has a network of 87 chapters and 25,467 registered patients all over the country. Our aim is to reach out to persons with hemophilia and to provide total quality care, education, stability and respectability through economic rehabilitation programs. We also work on research and prevention of hemophilia through Continuous Medical Education (CME) programs with the medical fraternity and also lobby with the Government and other organizations to include it under the National Health Program and other welfare schemes. HFI is a member Organization in the World Federation of Hemophilia based in Canada. We also work in close collaboration with The Ministry of Health & Family Welfare (MOHFW), Government of India (GOI). In spite of our efforts, we still need to reach out to more than 80% of the C&PWH in our country, and limited resources are a big challenge for us.

We faced no challenge during this period. Our goal/plan for the next six months; • Procuring & supplying Anti – Hemophilic Factor at an affordable cost / free. • Proper identification and diagnosis of Hemophilia. • Carrier detection and pre – natal diagnosis for prevention of Hemophilia. • Building chapters to increase accessibility for PWH throughout the country and set up strong awareness and information campaign. • Creating awareness among the medical community. • Lobbying with the central government for Govt. recognition and Networking with other likeminded organizations. • Sponsoring treatment & education of Children with Hemophilia under SAC & SOL.
• Running a separate HIV cell and reimbursing 50% cost of ART (Anti-Retroviral Therapy) and 100% cost of medicinal & AHF support. • Providing economic rehabilitation to deserving PWH & Scholarships to CWH. • Organizing Training & Physiotherapy camps. • Organizing training for doctors, physiotherapist and lab technicians. • Organizing training in administrative and managerial skills for key persons of chapters. • Providing psychosocial support to patients and their families. • Printing of information & education material for PWHs, their family and doctors

Geetha PN, age 61, is one of the rarest cases of female suffering from hemophilia (Inhibhitors). She was a diagnosed to have acquired Hemophilia A where there is no hemophilia family history of this patient. She is an old woman staying with her son and husband in a small village of Surabhi along with his son's children and wife who serves in a private company. She has continuous bleeding in the right lower lobe of lung which is worsening in spite of supportive care. She is admitted at AIMS, Cochin under the treatment of Dr Neeraj Sidhanthan (Hematologist, AIMS). A very large quantity of expensive AHF FEIBA is constantly required for her treatment which was out of the reach of his husband and son. Therefore, they approached HFI for immediate support, HFI has provided 500ius of FEIBA from the support provided through Give India. Geetha and her family are very thankful to the donors & Give India for his kind lifesaving support and expect the same in future also.

From the donation given through Give India Programs, treatment and management (AHF) support was provided to people and children with haemophilia across India. With this support, beneficiaries were prevented from becoming disabled or dying. Beneficiaries and their families are very thankful for this life-changing/saving support, especially during the pandemic when access to appropriate treatment was very challenging. We at HFI are very thankful to Give India for their continuous support towards the cause of haemophilia and expect the same in the future also.

Activities under this programme were difficult to execute and therefore delayed because of lockdown and restrictions due to the crisis situation caused by the pandemic. But we overcame the hurdles by exploring other channels to provide support to needy patients. We also compensated for the delay by intensifying our activities as soon as the lockdown was over. Over the next six months, we plan to support more poor people and children who have suffered a massive setback because of the pandemic.

Safi, 45 is a Person with Hemophilia (PwH) from the Palghar district of Maharashtra. He is an Inhibitor patient – who cannot be treated with factor VIII/IX and has to be given FIEBA to stop bleeds. He is married and has two school-going children. His wife is a homemaker. He has not been working for the last three years because of a kind of blindness termed Vogt-Koyanagi syndrome, caused by severe diabetes accompanied by hemophilia, which has badly affected his eyes and brain. Because there are no earning members in his family, he is completely reliant on his brother, who supports him and his family. For the past three years, he was being injected with steroids for his vision, but that was affecting his health very badly as he is diabetic. To avoid further harm to his health, doctors recommended Ozdurex implants to restore his vision, and he was operated on with the help of HFI.The surgery was successful, but it would take three months after the surgery to get back his vision. A few days after the surgery, as he still could not see, he slipped and fell in the bathroom, injuring his left leg. A large quantity of expensive AHF-FIEBA was required to stop the bleeding, but neither he nor his family were in a position to afford the same. In this critical situation, his family approached HFI for support. AHF-FEIBA was provided to Safi from the donation given through Give India as a partial support balance. FEIBA was provided by other donors. With this support, Safi was prevented from becoming further disabled. Safi and other patients like him and their families are very grateful to Give India for this life-changing/saving support and expect the same in the future also.

Treatment /management (AHF) support was provided to Persons & Children with Hemophilia pan India from the donation given through GiveIndia Programs. With this support, beneficiaries were prevented from getting disabled/dying. Beneficiaries & their families are very thankful for this life-changing/saving support. We at HFI are very thankful to GiveIndia for their continuous support towards the cause of hemophilia and expect the same in future also.

Activities under this programme were delayed because of lockdown & restrictions due to Covid -19 crisis but we compensated for the delay by intensifying our activities as soon as the lockdown was over. In the next six months, we plan to support more poor P& Cwh who have suffered a massive setback because of Covid -19.

15 yr old Lavish Kumar is an Inhibitor Child with Hemophilia - CwH, staying in Delhi with his parents & sister. His father works in a private Estate Agency for a meagre salary and his mother is a housewife, his sister is studying in Std X but lavish had to discontinue his studies after his one leg got deformed because of knee injury and he is unable to walk and is on a wheelchair since then and will not be able to walk until he undergoes a corrective surgery. A large quantity of AHF will be required for his surgery and he is an inhibitor the cost of AHF – FEIBA required for the surgery is very high and out of the reach of Lavish’s parents. Moreover, since the time he got injured he gets repeated bleeds from his damaged knee joint and requires a regular infusion of FEIBA to stop the bleeds. Repeated bleeds that are not stopped in time can lead to permanent disability 500 IUs of FEIBA donated through Sponsor blood units to poor patients with hemophilia was provided to Lavish, so that the same could be infused whenever he gets a bleed and this will prevent his knee joint from getting further damaged and he getting disabled.Lavish & his family are very thankful to the donors for their kind support which can prevent him from getting disabled and expect the same in future also & HFI is very thankful to Give India for his continuous support which has proved lifesaving for the hemophilics.

10 yr old Malaya Tandia is a Child with Hemophilia (CwH) suffering from factor VIII deficiency studying in class V in a small school in his village, he has one younger brother who is also studying in II std in the same school. His father has expired therefore their mother is the only earning member of the family through farming in their small farm with an annual income of Rs. 35,000/-

Recently when Malaya had a bleed from his right ankle & left knee, he was immediately rushed to VSS Medical College & Hospital, Burla., which is quiet far from his home. There his treating doctor prescribed a minimum of 2000ius of factor VIII for adequate treatment. With his small income it was very difficult for Malaya’s mother to purchase the expensive AHF along with the cost of travel to take him to the hospital under such restrictive conditions because of the ongoing Covid -19 crisis and amidst the risk of getting infected. His mother was therefore in a helpless state as they are already in a very bad financial state due to the ongoing pandemic, but nevertheless her son was not given immediate treatment his ankle & knee would get permanently damaged

Realizing the gravity of the situation Malaya’s mother approached HFI for help, HFI immediately provided free factor VIII for Malaya from the support provided through this Give India program. This timely treatment because of availability of free AHF enabled to stop the bleeding instantly, and his ankle and knee were prevented from getting further damaged and also prevented him from getting disabled.

Malaya & his family are short of words to thank donors for this life changing/saving support during such tough times and expect the same in the future also & We at HFI are very grateful & indebted to the donors under this program for their kind support, we value their friendship and hope it remains with us forever

Importance of Blood

One unit of gift to this program helps spread the expense of 100 units of Factor VIII for helpless hemophilia patients. Hemophilia Foundation helps oppressed Hemophilic patients opportune, adequate and proper treatment. Hemophilia A, additionally called factor VIII lack is a hereditary issue brought about by absent or faulty factor VIII, a coagulating protein. Individuals with hemophilia A drain longer than others. Draining can happen inside, into joints and muscles, or remotely, from minor cuts, dental systems or injury. Hemophilia patients who can't bear the cost of ideal, adequate and proper treatment could wind up with outcomes, for example, perpetual handicap, HIV/AIDS, Hepatitis B/C contaminations, and even passing.

Care and support being provided

Program Update

Identify poor persons & children with hemophilia from the villages of the
states mentioned & facilitate their treatment by providing free AHF for home
therapy (AHF to be infused at home or by a local doctor till the time
the patient reaches the city/district hospital)surgeries,severe bleeds and other
emergencies. Mails were sent to HFI chapters regarding the support available under the project and profiles of deserving beneficiaries were invited,beneficiaries were shortlisted on the basis of their merits and supported with blood units Anti Hemophilic factor (AHF) for home therapy, routine/severe bleeds & surgeries.More beneficiaries will be shortlisted and supported in the next quarter

Story from the field

Sreeraman KH is a factor VIII Inhibitor patient and a student in 3rd year B.Com. His father is a small lottery ticket vendor and mother is a saleswoman in a private local company. He has one sister who is also studying in Std IX. The family is just surviving with the small income of both the parents and to add to their miseries the had a very big loss in the Kerala floods last year as their house was badly affected.
Sreeraman has frequent bleeds from his knee & ankle joints and has to very often miss college because his parents cannot afford the expensive Inhibitor factor. Therefore, HFI provided him with 500ius of AHF from the donation given by Dr. Vijay Prakash through Give India for home therapy. With this support Sreeraman will be able to infuse this factor whenever he has bleed and will be able to go to school more regularly. This support will make a big difference to his health & studies especially during these exam days.

Sreeraman is now pursuing his final year B.Com and plans to do his Chartered Accountancy he is very enthusiastic & hard working boy who wants to live life to the fullest.

Sreeraman & his family are very thankful to Dr. Vijay Prakash for his kind support & expect the same in the future also

Program Update

DANIDA and The Danish Hemophilia Society has twinned with HFI, for the last eight years, to run the Project – Living with Hemophilia, till 2007 which has made tremendous difference in the lives of the PWH in India. Projects with The Hans Foundation for education & treatment of children and persons with Hemophilia since last 9 years making a continuous and meaningful difference in the lives of this hapless community. "Extending Hemophilia Care through Chapter Empowerment” a project with Volkart Foundation for the upliftment of persons with hemophilia. ONGC supported Project HEAT “Hemophilic Children’s Education & Transformation” for providing education to 1000 children with hemophilia. NACO (National Aids Control Organization), Government of India provided treatment (Anti Hemophilic Factor) to HIV+ persons with hemophilia for three years till 2008. SAIL supported Project “Heal a Child” & Project “Hemophilia Care & Prevention” for treatment of children with hemophilia. Registered with Give India and being supported through individual donation for the last 4 years. ONGC supported project “Prevention is Better Than Cure” sponsoring Carrier Detection and Pre Natal Diagnosis of girls and women with Hemophilia family background. BHEL Supported project “Heal A Soul” for providing free medicine (AHF) to 301 persons and children with hemophilia from all over India. SAC (Sponsor a Child) UK supported treatment project for the hemophiliac children in India. SOL (Save One Life) USA is supporting children with hemophilia in India with general donation. At present more than 750 children are being sponsored under SOL for General Donations, Micro Grants & Scholarships. BHEL Supported project “Heal A Soul -II” for providing free medicine (AHF) to 720 persons and children with hemophilia from all over India. NNHF (Novo Nordisk Hemophilia Foundation) supported project for the training and development of the Youth Group to raise the voice of Young Hemophiliacs of India and to take the Hemophilia movement ahead in India. NNHF (Novo Nordisk Hemophilia Foundation) supported project “LEAD IT” for empowering the carrier women and the women family members of hemophilic families’ in
India. ONGC supported project “Asha Ki Kiran” to provide treatment support to Inhibitor C & PwH from all over India

Story from the field

Kamlesh Kumar is a severe factor IX patient staying in Dhananjaypur - Uttar Pradesh. His father is a farmer and mother is a house wife and has no brothers & sisters. Recently Kamlesh had a severe bleeding in his right leg calf which required infusion of factor IX on a regular basis or his leg would get further damaged leading to permanent disability as his knee joints are already damaged and he limps while walking and he was not being able to work because of the bleed. With the small income it was not possible for him or his parent to afford the large quantity of expensive Anti Hemophilic Factor (AHF) IX required to stop the bleed. In this serious situation HFI was approached for help. 600ius of factor IX was given to Kamlesh from the support provided by Dr. Vijay Prakash through Give India as partial support. Kamlesh was able to go regularly to work with this support he and his family & HFI are very thankful to Dr. Vijay Prakash for his kind donation and expect the same in future also. The story of Kamlesh Pal is not just another HFI success story. It’s about how he challenged whatever life had in store, with a smile. Married with two children, this Varanasi based man was an enterprising dreamer, but a frequently bleeding Hemophiliac at the same time. Enrollment into Post Graduation and a decent job was what he wanted after he completed his Graduation with great financial difficulty, but with even greater will power. Realizing his practical dreams and the underlying determination to make them come true, HFI got Kamlesh included in the Save One Life (SOL) project. This takes care of his financial needs of his family and education. He is appearing for examinations through Board of Technical Education, Lucknow (Polytechnic). As a mark of gratitude, Kamlesh helped doctors in the care of Hemophiliacs, for he has the basic knowledge of medicine and can empathize well with them. Presently Kamlesh is working at Hemophilia Federation (India) in the resource department and is contribution to the cause of hemophilia in his own capacity. All said, the will in Kamlesh finally got a way !