Project gives them a voice to share with others:
Inheriting Sickle Cell Genes
Photovoice, a Seattle-area photo project that enables teenagers to share their life experiences with a debilitating disease such as sickle cell anemia, gives a visual description of kids living with the disease. Sickle cell anemia is a serious disease in which the body makes abnormally shaped red blood cells, causing pain, organ damage and a low blood count. Seema Mhatre, Photovoice’s coordinator, said: “Sometimes we give cameras to people who don’t feel like they have power and it helps them create change. When these kids have pain crises, they have to be admitted to the hospital many times and they sometimes don’t feel like they’re understood.”
SICKLE CELL ANEMIA
Sickle cell anemia is a serious disease in which the body makes abnormally shaped red blood cells, causing pain, organ damage and a low blood count.
It’s a genetic disorder affecting about 72,000 Americans. There is no cure. Pain medication and blood transfusions are common treatments. One in 600 African Americans and one in every 1,000-1,400 Hispanic Americans are born with the disease.
While the disease in the U.S. most commonly affects people of African descent, people with ancestors from South America, Cuba, Central America, Saudi Arabia, India and Mediterranean countries such as Turkey, Greece and Italy also can be affected.
Source: National Heart, Lung and Blood Institute.
Doctor WatchDog Notification Service Sphere It
A treatment made from natural plants is reported to greatly reduce the number and severity of SCD crises. It is Nicosan and is not available in the US at this time.
So where can it be found?
Here is the latest on Nicosan/Niprisan a treatment for sickle cell anemia that has orphan drug status with both the FDA and E.U. The only thing holding it back is the pending investigational drug applications. It has completed phase IIb clinical trials.
This drug could be obtained for use in the United States if a concerned group of patients would enlist the aid of a doctor to apply for the FDA’s expanded access program. It is a way for a non-toxic drug which is not approved to be made available for conditions where no approved drug is as safe. This drug shows a more than competitive success rate with none of the side effects of hydroxyurea.
United Nations Economic Commission For Africa
Book Of Abstracts
Science With Africa Conference
March 3-7, 2008
page 30
Evaluation of Niprisan (Herbal Medicine) for the Management of Sickle Cell
Anaemia
Charles Wambebe and Hadiza Khamofu, International Biomedical Research in Africa, Abuja,
Nigeria, wambebe@yahoo.com, Joseph Okogun, Nathan Nasipuri and Karynius Gamaniel,
National Institute for Pharmaceutical Research and Development, Abuja, Nigeria.
About 70% of all sickle cell anemia (SCA) subjects reside in Africa, estimated at over 12 million. The prevalence of SCA is estimated at over 2% while infant mortality is about 8% and survival rate of SCA babies in rural areas by five years of age is about 20%. These statistics indicate that SCA is probably the most neglected (and sometimes forgotten by health authorities) serious public health disorder with serious mortality and morbidity rates in Africa. The objective was to undertake pre-clinical and clinical assessments of a herbal extract vis-à-vis management of sickle cell anemia using Good Laboratory Practice and Good Clinical Practice principles respectively. In Africa, there is no standard treatment for sickle cell anemia, only palliative management is generally available. In view of this situation, most
SCA subjects use herbal medicines. NIPRISAN is a standardized extract from four medicinal/food plants: Piper guineenses seeds, Pterocarpus osun stem, Eugenia caryophyllum fruit and Sorghum bicolor leaves. Short term toxicity study indicated that NIPRISAN was safe in laboratory animals. Bio-activity guided fractionation show that vanillin and aromatic aldehydes may be the bioactive moieties. NIPRISAN reversed sickled red blood cells and
protected them from being sickled when exposed to low oxygen tension. NIPRISAN dose- dependently delayed polymer formation of haemoglobin S. NIPRISAN induced 85% increased solubility of deoxy haemoglobin S. The in vivo efficacy study was undertaken at Children Hospital of Philadelphia, USA. Histological examination of lungs of control Tg transgenic mice carrying human sickle haemoglobin showed entrapment of massive numbers
of sickled cells in alveolar capillaries. NIPRISAN significantly cleared the lungs of sickled cells. Furthermore, NIPRISAN induced profound effect on the survival time of Tg mice under hypoxic conditions (p
United Nations Economic Commission For Africa
Book Of Abstracts
Science With Africa Conference
March 3-7, 2008
page 30
Evaluation of Niprisan (Herbal Medicine) for the Management of Sickle Cell
Anaemia
Charles Wambebe and Hadiza Khamofu, International Biomedical Research in Africa, Abuja,
Nigeria, wambebe@yahoo.com, Joseph Okogun, Nathan Nasipuri and Karynius Gamaniel,
National Institute for Pharmaceutical Research and Development, Abuja, Nigeria.
About 70% of all sickle cell anemia (SCA) subjects reside in Africa, estimated at over 12 million. The prevalence of SCA is estimated at over 2% while infant mortality is about 8% and survival rate of SCA babies in rural areas by five years of age is about 20%. These statistics indicate that SCA is probably the most neglected (and sometimes forgotten by health authorities) serious public health disorder with serious mortality and morbidity rates in Africa. The objective was to undertake pre-clinical and clinical assessments of a herbal extract vis-à-vis management of sickle cell anemia using Good Laboratory Practice and Good Clinical Practice principles respectively. In Africa, there is no standard treatment for sickle cell anemia, only palliative management is generally available. In view of this situation, most
SCA subjects use herbal medicines. NIPRISAN is a standardized extract from four medicinal/food plants: Piper guineenses seeds, Pterocarpus osun stem, Eugenia caryophyllum fruit and Sorghum bicolor leaves. Short term toxicity study indicated that NIPRISAN was safe in laboratory animals. Bio-activity guided fractionation show that vanillin and aromatic aldehydes may be the bioactive moieties. NIPRISAN reversed sickled red blood cells and
protected them from being sickled when exposed to low oxygen tension. NIPRISAN dose- dependently delayed polymer formation of haemoglobin S. NIPRISAN induced 85% increased solubility of deoxy haemoglobin S. The in vivo efficacy study was undertaken at Children Hospital of Philadelphia, USA. Histological examination of lungs of control Tg transgenic mice carrying human sickle haemoglobin showed entrapment of massive numbers
of sickled cells in alveolar capillaries. NIPRISAN significantly cleared the lungs of sickled cells. Furthermore, NIPRISAN induced profound effect on the survival time of Tg mice under hypoxic conditions (p
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thank you
Deborah