Pritam has hope of a normal life despite having hemophilia
Pritam Mazumder was born with hemophilia with factor IX deficiency. He lives with his family in a small village in West Bengal. His father is a farmer. He is the sole earning member of the family. They have an extremely unstable income. They manage to make ends meet with great difficulty.
Hemophilia B, also called factor IX (FIX) deficiency is a genetic disorder caused by missing or defective factor IX, a clotting protein. People with hemophilia B 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 treatment for hemophilia B is to intravenously infuse concentrated FIX product, called clotting factor through a vein in the arm or a port in the chest.
Living with a disease that has no cure, Pritam always has to be ready for life threatening situations. On one instance he started suffering from severe pain in his lower back. He was unable to move from his bed. Upon consulting the doctor, he was advised to immediately have factor IX infusion.
A large quantity of factor IX was required immediately. The cost of the required units of factor IX crossed over a lakh. His father had no means of arranging this amount. He was helpless and was at a complete loss of options.
Seeing their situation the doctor referred them to Hemophilia Federation.
*Hemophilia Federation supported him with 4800 IUs of factor IX. This covers close to Rs.1,00,000/- of his treatment costs. *Pritam was treated by infusing the required units. His condition was brought under control and he recovered well.
He is now registered with at the Kolkata chapter chapter of the hemophilia society.
Your help can many more patients like Pritam. You can donate so that the poor patients who suffer from incurable genetic diseases can get support to have 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 IX for poor hemophilia patients
Hemophilia B, also called factor IX deficiency is a genetic disorder caused by missing or defective factor IX, 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 IX costs Rs.20/- 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)
23 March, 2021
16 yr old Soumya Ranjan Sahoo is a Child with Hemophilia (CwH) suffering from factor IX deficiency studying in class XII, he has one younger brother who is also studying His father is a small vegetable vendor with an annual income of Rs. 40,000/- and his mother is a house wife therefore his father is the only earning member of the family.
Recently Soumya had a bleed from his left elbow, he was immediately rushed to SCB Medical College, Cuttack. which is quiet far from his home. There his treating doctor prescribed a minimum of 2400ius of factor VIII for adequate treatment. With his small income it was very difficult for Soumya’s father to purchase the expensive AHF along with the travel expense to take him to the hospital under such restrictive conditions because of the ongoing Covid -19 crisis admist the high risk of getting infected. His father and family were therefore in a helpless situation as they are already in a very bad financial state due to the ongoing pandemic. But nevertheless if their son was not given immediate treatment his elbow would get permanently damaged
Realizing the gravity of the situation Soumya’s father approached HFI for help, HFI immediately provided free factor IX for Soumya as partial support from the support provided through this Give India Program. This timely treatment because of availability of free AHF enabled to stop his bleeding instantly, and his elbow was prevented from getting further damaged and also prevented him from getting disabled.
Soumya & his family are very thankful to the donors for the life changing/saving support in such tough times and expect the same in the future also.
5 July, 2020
Save lives from getting disabled by sponsoring blood units
Save lives from getting disabled by sponsoring blood units
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 IX for poor hemophilia patients. Men from families such as factory-workers, daily wage earners, rickshaw pullers, vegetable vendors, or household require help. Hemophilia Foundation aims to help such needy patients.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. P & CwH were provided treatment support by HFI pan India using speed post facilities to dispatch the medicines despite the global crisis which prevented many hemophilic children and adults from getting disabled/dying