SAC - Reviving Hope
SAC - Reviving Hope
Project Brief: The Hemophilia project aims to provide support and assistance to families with persons suffering from Hemophilia. The range of support offered includes supporting treatment, medicines, health & nutritional supplements, transportation and vocation.
Project Type: Children with Disabilities (description)
Primary Focus: children with hemophilia (description)
Supporting Chapter Contact: Seattle
Project Type: Children with Disabilities (description)
Primary Focus: children with hemophilia (description)
Secondary Focus: other
Area: RuralSupporting Chapter Contact:
Status: completed - requirements ended
Project Steward: Jayashree Janardhan
Project Partner(s):
Other Contacts:
Project Address: , ,,,
Karnataka
Tel:
Stewarding Chapter: Seattle
Project Steward: Jayashree Janardhan
Project Partner(s):
Other Contacts:
Project Address: , ,,,
Karnataka
Tel:
Stewarding Chapter: Seattle
Asha Stars, if any:
Jayashree Janardhan
The Hemophilia project aims to provide support and assistance to families with persons suffering from Hemophilia. The range of support offered includes finding doctors who can help, supporting cost of treatment, medicines, health & nutritional supplements, transportation and possible long term vocation. Currently this project supports:
Here is the list of all the children supported so far.
Help Required
We welcome all contributions that will help us secure factor VIII for this case. We need contributions for surgery and subsequent acquisition of factors for both the boys on a monthly basis. Monthly requirement for each boy is $62/- per month. The support ($62 per month per child) covers cost of factors, medicines, health & nutritional supplement, transportation (whole) to school.
Another help that is required is to contact hospitals willing to donate expired factors for use in India. Currently nearly expired or expired factors are being used to treat patients with Hemophilia in India since the medication is completely unaffordable otherwise. These will be hospitals in the US, which destroy factors which almost reach their expiry dates. Such factors can still be used in our case.
Hemophilia and Associated Joint Problem
Hemophilia (or Haemophilia) is a rare (one in 5000 males) but life-long genetic blood disorder. It is X-chromosome linked - while females are its carriers, it is males who suffer from it. However, it is not always hereditary and can appear in an individual without Hemophilia history in his lineage due to mutations. People with hemophilia have tendency for extensive bleeding - they don?t bleed more or faster than anyone else but they do bleed longer.
When we hurt ourselves we need certain proteins (They are called Factors and are numbered) to stop the bleeding. A person with hemophilia doesn't have enough of one Factor (less than 1% whereas normal varies between 50% and 150%). Hemophilia Type A means there is not enough of Factor 8 (75% cases) and Type B means not enough of Factor 9(25% cases). When a blood vessel gets broken, blood leaks out from it. When the cut is small a protein called Von Willebrand's Factor and tiny cells called platelets are enough to stop the bleed. When the damage is larger then all the other Factors (like Factor 8) are needed to form a stronger and bigger plug. So for small cuts, the bleeding stops even for people with Hemophilia. For larger bleeds the current medical treatment is to externally inject the Factor that is missing for Hemophiliacs (or Hemophilics). Bleeding can happen anywhere but it happens mostly in the joints and muscles. When the joint bleed occurs the membrane present in the joint capsule produces a digestive enzyme that eats away the trapped blood. However, the enzyme does not differentiate between blood and cartilage (smooth covering at the end of bones in the joint) and starts eating away the cartilage along with blood stuck to the bone-ends. When some cartilage is gone, the bone ends are not smooth - this can pinch or tear the membrane creating more bleeds and more enzyme! Soon all the cartilage is eaten up causing the bones to rub together - this hurts a lot. When not treated in time this can make joints immobile and end up causing crippling disabilities.
When bleeding begins, hemophiliacs first feel a tingling or bubbling sensation at the joint which then turns into pain. Before being given a Factor injection, as first aid they should be immediately give ice-pack treatment, the joint immobilized and ideally be given a crutch to move around. Hemophiliacs are advised to avoid playing contact sports like Kabadi and Soccer.
- The Shivaganga family in Holalakere, Davengere district, Karnataka
- The Chandramma family in a small village in Karnataka
Here is the list of all the children supported so far.
Help Required
We welcome all contributions that will help us secure factor VIII for this case. We need contributions for surgery and subsequent acquisition of factors for both the boys on a monthly basis. Monthly requirement for each boy is $62/- per month. The support ($62 per month per child) covers cost of factors, medicines, health & nutritional supplement, transportation (whole) to school.
Another help that is required is to contact hospitals willing to donate expired factors for use in India. Currently nearly expired or expired factors are being used to treat patients with Hemophilia in India since the medication is completely unaffordable otherwise. These will be hospitals in the US, which destroy factors which almost reach their expiry dates. Such factors can still be used in our case.
Hemophilia and Associated Joint Problem
Hemophilia (or Haemophilia) is a rare (one in 5000 males) but life-long genetic blood disorder. It is X-chromosome linked - while females are its carriers, it is males who suffer from it. However, it is not always hereditary and can appear in an individual without Hemophilia history in his lineage due to mutations. People with hemophilia have tendency for extensive bleeding - they don?t bleed more or faster than anyone else but they do bleed longer.
When we hurt ourselves we need certain proteins (They are called Factors and are numbered) to stop the bleeding. A person with hemophilia doesn't have enough of one Factor (less than 1% whereas normal varies between 50% and 150%). Hemophilia Type A means there is not enough of Factor 8 (75% cases) and Type B means not enough of Factor 9(25% cases). When a blood vessel gets broken, blood leaks out from it. When the cut is small a protein called Von Willebrand's Factor and tiny cells called platelets are enough to stop the bleed. When the damage is larger then all the other Factors (like Factor 8) are needed to form a stronger and bigger plug. So for small cuts, the bleeding stops even for people with Hemophilia. For larger bleeds the current medical treatment is to externally inject the Factor that is missing for Hemophiliacs (or Hemophilics). Bleeding can happen anywhere but it happens mostly in the joints and muscles. When the joint bleed occurs the membrane present in the joint capsule produces a digestive enzyme that eats away the trapped blood. However, the enzyme does not differentiate between blood and cartilage (smooth covering at the end of bones in the joint) and starts eating away the cartilage along with blood stuck to the bone-ends. When some cartilage is gone, the bone ends are not smooth - this can pinch or tear the membrane creating more bleeds and more enzyme! Soon all the cartilage is eaten up causing the bones to rub together - this hurts a lot. When not treated in time this can make joints immobile and end up causing crippling disabilities.
When bleeding begins, hemophiliacs first feel a tingling or bubbling sensation at the joint which then turns into pain. Before being given a Factor injection, as first aid they should be immediately give ice-pack treatment, the joint immobilized and ideally be given a crutch to move around. Hemophiliacs are advised to avoid playing contact sports like Kabadi and Soccer.
This project began by supporting two children with hemophilia - Rudra and Santosh. The project is managed by Kuvempu Trust.
