Nagaraju keeps his hemophilia under control with a little help
Nagaraju was born with hemophilia with factor VIII deficiency. He lives with his mother in Hyderabad. His father passed away when he was very young. This led to his mom being the sole earning member of the family.
His mother is uneducated. She works as a tailor. She has a very unstable income. They manage to make ends meet with great difficulty.
Hemophilia A, also called factor VIII deficiency, is a genetic disorder caused by missing or defective factor VIII, a clotting protein. People with hemophilia A bleed longer than other people. Bleeding can occur internally, into joints and muscles, or externally, from minor cuts, dental procedures or trauma.
Currently, there is no cure for hemophilia. The main method of treatment for hemophilia A is to intravenously infuse a concentrated FVIII product called clotting factor or simply factor through a vein in the arm or a port in the chest.
Living with a disease that has no cure, Nagaraju always has to be ready for life threatening situations. On one instance he got affected with a peritoneal bleed - an internal bleeding. He was admitted in the Little Star's Children Hospital.
A large quantity of factor VIII was required to control his bleeding immediately.** The cost of this requirement crossed over a lakh.** His mother had no means of arranging this amount. She was helpless and was at a complete loss of options.
Seeing their situation the hospital referred them to Hemophilia Federation.
Hemophilia Federation with the support of The Hans Foundation provided 5012 IUs of factor VIII which covers close to Rs.60000/- as partial support. Nagaraju was treated by infusing the required units. His internal bleeding was controlled and he recovered well.
He is now registered with the Hyderabad chapter of the Hemophilia society.
Your help can many more patients like Nagaraju. You can donate so that the poor patients who suffer from hemophilia can get support and ave a normal life. You can give with confidence because every program listed is GIVEASSURED.
By donating to this program
You will be sponsoring the benefits for different beneficiaries every month
What the beneficiary gets
Hemophilia Foundation helps underprivileged Hemophilic patients timely, sufficient and appropriate treatment.
One unit of donation to this program helps cover the cost of 100 units of Factor VIII for poor hemophilia patients
Hemophilia A, also called factor VIII deficiency is a genetic disorder caused by missing or defective factor VIII, a clotting protein. People with hemophilia A bleed longer than other people. Bleeding can occur internally, into joints and muscles, or externally, from minor cuts, dental procedures or trauma. Hemophilia patients who can't afford timely, sufficient and appropriate treatment could end up with consequences such as permanent disability, HIV/AIDS, Hepatitis B/C infections, and even death.
Unfortunately many patients suffering from hemophilia belong to Below Poverty Line (BPL) families. Due to the lifelong, incurable nature and very expensive management of the disorder Antihemophilic Factor (AHF), it becomes difficult for families to meet expenses of the same. The requirement for AHF can be even more in case of severe bleeding and surgeries. This is not a one-time expenditure and necessity occurs whenever an injury may occur.
Most men from such families are factory-workers, daily wage earners, rickshaw pullers, vegetable vendors, or household help..
Hemophilia Foundation aims to help such needy patients.
They maintain a list of the most deserving patients based on the severity of the condition as well as family income.
AHF is allocated to beneficiaries as and when required
The AHF units are procured and stored at the head office in Delhi. Whenever a local chapter is short of enough units, they send a request to the head office. The required units are sent to the chapter.
Once the units are received, the patients are notified for collection. They take it to the hospital for transfusion. In cases where the volume from a certain area is high, the chapter sends it to the hospital and notifies the patients, who then directly go to the hospital for the transfusion.
A second installment is given only after receiving satisfactory proof that the first installment of AHF was properly utilized.
In case of death of a beneficiary or underutilized medicine by another patient, a new beneficiary is identified to be helped.
Hemophilia is a life-long condition and there is no limit to the treatment needed. A hemophilia patient may injure himself/herself on an average of 3-4 times a month. Hemophilia factor VIII costs Rs.12/- per unit. A minimum of 500-1000 units of AHF is required by a haemophilic patient each times for a minor injury. If the injury is critical then it depends on the severity.
Hemophilia Federation has presence through 79 chapters across all states.
When you donate to this program you give a patient suffering from a life-threatening disease hope to live a normal life.
Hemophilia Federation (India)
30 September, 2021
Sponsor blood units to poor patients with hemophilia
Activities and work undertaken in the last 5-6 months
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.
Challenges faced and next steps
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.
Stories from the ground
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.
23 March, 2021
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
5 August, 2020
Importance of Blood
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.
19 November, 2019
Care and support being provided
Care and support being provided
22 July, 2019
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
|What is the expected total number of beneficiaries in this program for FY18-19?||5|
|What is the number of beneficiaries/ benefits provided in this program, Year-To-Date||2|
|Village/City/State where project is located||Pan India|
|Total Budget for the project for FY18-19||200000|
|Total Expenses for the project YTD||100000|
23 May, 2019
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 !
|What is the number of beneficiaries/ benefits provided in this program, Year-To-Date||4000|
|Village/City/State where project is located||Pan India|
|Total Budget for the project for FY18-19||50000000|
|Total Expenses for the project YTD||45000000|