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AYURVEDA-HOPE FOR THALASSEMIA MANAGEMENT??

 

8TH MAY is celebrated as “Thalassemia day” world wide. Thalassaemia, known as Mediterranean anemia or Cooley's anemia is a genetic blood disease. People born with this disease cannot make normal hemoglobin (anemia), which is needed to produce healthy red blood cells, and so it is one of the most challenging forms of hematological disorders. Normally below said signs and symptoms are observed in early childhood and may include:

  • Fatigue (feeling tired) and weakness
  • Pale skin or jaundice (yellowing of the skin)
  • Protruding abdomen with enlarged spleen and liver
  • Protruding abdomen with enlarged and dark urine
  • Abnormal facial bones and poor growth

The only available management of this disease is the blood transfusion at regular interval. Special thalassaemic ward is being developed at district level hospitals like G.G.hospital Jamnagar, Thalassaemic society Rajkot, Asha children’s hospital Porbandar. In normal human body RBC of the blood get destructed and the Heam (Iron) of the body is used in formation of the new RBCs. But unfortunately blood regulatory system of the thalassaemic child’s cannot reuse it and thus it leads to the most serious complication Iron over loading, a life threatening multiple organ damage as Iron Deposits form in the Liver, Heart, and Endocrine Glands, which causes the organ damage, morbidity and mortality, unless adequately removed from parenchymal tissues. From the age of 3 years, iron is removed by The Desferrioxamine, which is administered under the skin of the abdomen or via an implanted venous (vein) port.

·         As presently, the only available treatment for iron overload in Thalassaemia patients is pump-infusion therapy. Patients that cannot tolerate the side effects of the daily injections or medicine  (side effects like Tiredness, lack of energy and fatigue, Nausea and vomiting, Diarrhea, Hair loss, Low blood counts, Mouth problems, Skin problems, Loss of appetite, Anxiety, depression and grief)  may refuse this burdensome therapy and eventually die of Iron overload.

·         Moreover, once the appropriate dose for an individual is determined, the drug must be administered on a daily or near-daily basis. This treatment costs around 250-300Rs per seating and if a patient needs lives for 20 years approximately 5000 times this treatment is to be given, which costs around 10,00,000-15,00,000 Rs. Which is very costly for an average 

patient. 

·          Due to higher cost of the pump infusion therapy, only 5 to 10 % thalassaemic children are being treated with it. Rests are at their own risk.

The scientists of Gujarat Ayurveda university, are trying to the search for effective, orally administrable and economical herbal medicine. In the department of Rasashashtra under the guide ship of energetic research scientist Dr. P.K.Prajapati one research work is being carried out.

Ph.D scholar of the same department Dr. Joban Modha is working on the subject of

“A Comparative Pharmaceutico-Pharmaco-Clinical Study of Herbo-Mineral Compounds (Gandhakadi yoga A and Gandhakadi yoga B) and its effect on Iron Over Loading due to RaktaVikriti W.S.R. to Thalassaemia.”

Medical director of the well-known N.G.O. of Rajkot “LIFE” and most renowned pathologist in the field of Thalassaemia Dr Atul Pandya is taking keen interested in the research work. Entire team is very hopeful for promising result and all the parents of thalassaemic children are requested to contact

Dr. Joban Modha on 09825273008 OR jkmodha@yahoo.com; jkmodha@rediffmail.com.

 

What is Thalassemia?


(Also known as Mediterranean anemia or Cooley's anemia) is a genetic blood disease. People born with this disease cannot make normal hemoglobin (anemia) which is needed to produce healthy red blood cells.


Who carries Thalassemia?


People of Chinese, South Asian, Middle Eastern, Mediterranean, or African origin.


What is Thalassemia Minor?
People with a thalassemia mutation only in one gene are known as carriers or are said to have thalassemia minor. Thalassemia minor results in no anemia or very slight anemia. People who are carriers do not require blood transfusion or iron therapy, unless proven to be iron deficient.

What is Thalassemia Major?
Children born with thalassemia major usually develop the symptoms of severe anemia within the first year of life. Lacking the ability to produce normal adult hemoglobin, children with thalassemia major:
- are chronically fatigued
- fail to thrive, and
- do not grow normally
Prolonged anemia will cause bone deformities and eventually will lead to death within the first decade of life. The only treatment to combat severe anemia is regular blood transfusions.

How can Thalassemia be treated?
Regular blood transfusions allow patients with thalassemia major to grow normally and be active. Unfortunately, transfusions result in deadly accumulation of iron in the hearts and livers of patients by their teenage years. If the excess iron is not removed then the patients may suffer from a premature death due to iron overload.
Nowadays, drugs designed to remove excess iron (iron chelators) have significantly changed the prognosis of thalassemia major. Patients can grow and develop normally, with relatively normal heart and liver functions. Adult patients are living into their forties and some have children of their own.
Despite improved prognosis, many patients find the nightly 10 hour infusions difficult or painful and are reluctant to comply with their doctor's orders. These patients are not free of risk and may die prematurely due to iron overload.
Current treatments allow thalassemia patients to live relatively normal lives; however, a cure remains to be found. The genetic cause of thalassemia was one of the first genes discovered in the 1970's, yet 30 years later, gene therapy still eludes thalassemia patients.

Do you carry Thalassemia?
Many people from the areas of the world where thalassemia is common carry the gene for it on one chromosome (that is, they have thalassemia minor). You may believe that your blood has been tested for this specific gene but testing for thalassemia requires a special blood test. To be tested your doctor must order a blood test called HEMOGLOBIN ELECTROPHORESIS which can identify a carrier of thalassemia.
If you, your parents or ancestors are from an area of the world where thalassemia is common, PLEASE REQUEST hemoglobin electrophoresis blood test from your doctor.
It is important to identify yourself as a possible carrier of thalassemia (thalassemia minor). A person with thalassemia minor has a 25 %( 1 in 4) chance of having a baby with THALASSEMIA MAJOR if his/her mate also has thalassemia minor.

How do you inherit Thalassemia?
If both parents carry thalassemia minor, their children may have thalassemia minor, or they may have completely normal blood, or they may have thalassemia major. In each pregnancy there is a one in four (25%) chance that their child will have normal blood, a two in four (50%) chance that the child will have thalassemia minor or a one in four (25%) chance that the child will have thalassemia major.

How can we prevent Thalassemia?
Please share the information on this website with others. Show it to your family, friends, neighbors, coworkers or anyone who has origins from areas where thalassemia is common. Be sure to ask your doctor to test you for thalassemia minor. Increased awareness is the key.

Does a cure exist?
Presently, the only available treatment for iron overload in thalassemia patients is pump-infusion therapy. Patients that cannot tolerate the side-effects of the daily injections or medicine may refuse this burdensome therapy and eventually die of iron overload.
A cure needs to be found. Please do your part by spreading the word.

 

About Thalassemia

Thalassemia is one of the most challenging forms of hematological disorders. Ninety percent of the children develop symptoms of anemia in the first two years of birth, requiring blood transfusions for rest of their lives.

About 100,000 babies worldwide are born with severe forms of the disease each year. Thalassemia occurs most frequently in people of Italian, Greek, Middle Eastern, South Asian (Indian Sub-continent), and African ancestry.

Thalassemia, an inherited disease of the blood in which hemoglobin fails to form properly, is challenging to treat. Depending on its severity, the disease may cause an enlarged spleen, bone weakness and growth problems and may require regular blood transfusions starting in early childhood. The blood transfusions lead to the most serious complication, a life threatening multiple organ damage caused by the accumulation of excessive iron. From the age of 3 years, iron is removed using a needle inserted in the child’s stomach for 10-12 hours each day of their lives. Despite this treatment, the children often don’t survive beyond the age of 30-40 years and are frequently admitted to hospitals with life-threatening crises that can start with just a small infection. Children with this illness usually end up also suffering from other complications such as heart disease, cirrhosis of the liver, diabetes, facial deformities, and spinal cord abnormalities.

All forms of Thalassemia are transmitted only through heredity. It cannot be caught from another child or person who has it. The disease is passed on through parents who carry the Thalassemia gene in their cells. A "carrier" has one normal gene and one Thalassemia gene in all body cells, a state sometimes called having the "Thalassemia trait." Most carriers lead completely normal, healthy lives. When two carriers become parents, there is a one-in-four chance that their child will inherit a Thalassemia gene from each parent and be inflicted with a severe form of the disease. There is a two-in-four chance that the child will inherit one of each kind of gene and become a carrier like its parents; and a one-in-four chance that the child will inherit two normal genes from its parents and be completely free of the disease or carrier state. These odds are the same for each pregnancy when both parents are carriers.

What is being done to find a cure for Thalassemia?

While there are many promising research areas (fetal hemoglobin induction, gene therapy, cord blood and bone marrow transplant, alternative iron removal therapy, blood substitutes), unfortunately very little funding for medical research is being directed toward finding a cure for Thalassemia. In 1999, the National Institute of Health (NIH) awarded medical research grants worth only $800,000 for Thalassemia research, as compared to $10 million for cystic fibrosis (a genetic disorder primarily affecting Caucasians) and $24 billion for cancer research. The $800,000 supports four researchers with annual grants of $200,000 each. Medical researchers need more funding to assist them in their efforts – currently their hard work is based on their dedication and a minimal research budget.  

What is being done to prevent Thalassemia?
While some efforts are being undertaken by non-profit organizations in
India to create awareness of this illness among high- risk communities in India, currently there are no efforts directed towards non-resident Indians in countries like the US.

 

Who among Indians are at risk?

In certain Indian communities like Assamese, Bengali, Gujarati, Maharashtrian, Marwari and Punjabi, as high as 25% of the population are silent carriers of a defective Thalassemia gene and while mildly anemic are not otherwise affected by the illness. When two carriers marry they have a 25% chance of having a baby with this illness. Since we often marry within the same community, this tendency further increases the risk of this illness being passed on. Further more, without a well-known family history and/or a blood test; most couples are not even aware of their status as Thalassemia carriers. Hence, they are either completely taken by surprise after the birth of a child with Thalassemia or they find out during pregnancy, and are left with the painful choice between the birth of a child with the life-threatening chronic illness or abortion.

·         Thalassemia in India 

 According to a study, there are an estimated 30 million people in India who are Thalassemia carriers. In a study conducted in Orissa, almost 25% of the people in the sample were carriers of some trait of Thalassemia. The numbers of people who are carriers of the disease are estimated at between five and fifteen per cent of the population, as the numbers is hard to come by because of lack of knowledge. Of the over 100,000 children born with Thalassemia in the world, about 10,000 cases are in India. About 80-90 per cent of Thalassemia afflicted infants in India die either undiagnosed or because they lack proper treatment.

Super star Amitabh Bachchan is amongst thalassemia minor carrier.

·         Thalassemia in Gujarat:

As per information available according to our source, more than 2000 patients or thalassemia major are under regular B.T. 

Name of district

Number of patients

 of thal major

No of patients taking regular

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