Thalassaemia Frequently Asked Questions - Diseases and Health Care

Thalassemia is an inherited blood disorder in which the body makes an abnormal form of hemoglobin. Hemoglobin is the protein molecule in red blood cells that carries oxygen. The disorder results in excessive destruction of red blood cells, which leads to anemia. Anemia is a condition in which your body doesn’t have enough normal, healthy red blood cells.

What Are the Signs and Symptoms of Thalassemias?

1. A pale and listless appearance.
2. Poor appetite.
3. Dark urine (a sign that red blood cells are breaking down)
4. Slowed growth and delayed puberty.
5. Jaundice (a yellowish color of the skin or whites of the eyes)
6. An enlarged spleen, liver, or heart.

Is thalassemia blood cancer?

Thalassemias are inherited blood disorders that cause the body to make fewer healthy red blood cells and less hemoglobin than normal. Mild or severe anemia can also be present in people with thalassemias. The two major types of thalassemia are alpha and beta, named after defects in the hemoglobin protein chains.

What is the disease thalassemia?

Thalassemia is an inherited blood disorder in which the body makes an abnormal form of hemoglobin. Hemoglobin is the protein molecule in red blood cells that carries oxygen. The disorder results in excessive destruction of red blood cells, which leads to anemia.

What is beta thalassemia major?

Usually, they are mildly anemic and their red blood cells are smaller than normal. Beta thalassemia major (Cooley's anemia) happens when both of the beta globin genes are mutated (changed) and the mutations are severe. This is the most severe form of beta thalassemia.

What is thalassemia major disease?

Thalassemia Major. Thalassemia major occurs when a child inherits two mutated genes, one from each parent. Children born with thalassemia major usually develop the symptoms of severe anemia within the first year of life. They lack the ability to produce normal, adult hemoglobin and experience chronic fatigue.

Is there a cure for beta thalassemia?

People with severe thalassemia depend on blood transfusions to give them working red blood cells. A type of bone marrow transplant has been used to try to cure thalassemia, but it's hard to find compatible donors. And even if a donor can be found, there's still a risk that the patient's body will reject the transplant.

What is the thalassemia trait?

Thalassemia is an inherited blood disorder in which the body makes an abnormal form of hemoglobin. Hemoglobin is the protein molecule in red blood cells that carries oxygen. The disorder results in excessive destruction of red blood cells, which leads to anemia.

Can you give blood if you have thalassemia minor?

Yes it is possible for carrier to donate blood if their hemoglobin (iron) level meets the international criteria for donation. Yes it is ok for carriers to donate stem cells, such as those in bone marrow, for his/her diseased sibling. The problem is that carriers could have thalassemia major children.

Is thalassemia more common in males or females?

If both genes are affected, the result is moderate to severe anemia. The severe form of beta thalassemia is known as thalassemia major or Cooley's anemia. Thalassemias affect males and females. The disorders occur most often among people of Italian, Greek, Middle Eastern, Southern Asian, and African descent.

Wine Consumption: The Pros and the Cons

Drinking Wine

Should you or shouldn’t you?

The Plusses to Drinking Wine:

• 1-2 glasses of wine per day appear to reduce stress and the effects of chronic inflammation.
• Red wine contains polyphenols and this can be helpful to combat arteriosclerosis (hardening of the arteries)
• When you drink wine with a meal it makes the meal seem like a special occasion and thus you may eat more slowly (which enhances digestion)
• It is a better choice than sugary mixed drinks because these mixed drinks contain more sugar and thus spikes insulin.
• Wine drinkers tend to sip rather than guzzle their beverage which means fewer intakes of alcohol, sugar and calories.
• A moderate amount which is equivalent to 5 oz. per day has been shown to lower your risk of heart disease.
• Moderate amounts of red wine (1-3 glasses per day, 3-4 times per week) may reduce your risk of dementia, depression, and some cancers.
• Good News for you white wine drinkers!  White wine has been shown to have many of the same positive health benefits as red wine.

Downside to Drinking Wine

• If you drink alcohol in excessive amounts it can increase your risk for breast cancer, cause brain damage and damage to the liver and other organs
• Red wine does contain the antioxidant resveratrol that is found in the skin of grapes.  Resveratrol is good for fighting inflammation, heart disease, blood clotting, and cancer.  However the amount of resveratrol in wine is very low and to get the benefits of this powerful antioxidant, you would need to consume several bottles-not a good idea!  Add purple and black grapes to your diet and supplement with resveratrol for heart disease instead.
• Those who consume more than 5 oz. of red wine per day have a greater risk of heart disease.  Other studies show that 1-2 glasses of red wine per day can also lower your risk of stroke but more than this amount can increase your risk.
• When you start to go beyond moderate amounts of wine, the negative effects outweigh the benefits-for those who drink 2-3 glasses of red wine every day they have increased risk of liver disease, depression, weight gain and diabetes.
• Wines are still mostly empty calories that you may consume instead of healthy food choices so be cognizant if wine is replacing food in your diet.
• A glass of red wine (5 oz.) contains on average 125 calories.  So if you are consuming say 2 glasses 4 times per week that is 1,000 added calories per week.  It can easily cause the weight to creep on.

Sources: http://blogs.naturalnews.com/wine-consumption-pros-cons/

A Complete Guide to Thalassemia: Causes, Symptoms and Treatment

A genetic disorder, thalassemia is a blood disorder passed down through families in which the body makes an abnormal form of hemoglobin. 

What is Thalassemia?

1. Thalassemia is a group of inherited blood disorder
2. The genetic defect result in reduced and defective synthesis of hemoglobin
3. Characterized by anemia of varying severity.

Thalassemia Major:

1. The patient suffers with severe anemia, stunted growth & bony deformities.
2. It usually presents and get diagnosed within first six months of life.
3. If untreated, it is not compatible with life.
4. The only treatment is regular blood transfusion every moth throughout life.
5. The patients usually succumb to various complications in second or third decade.

Difficulties of Thalassemic patients and their parents:

Psychological stress-

The patient have to get admitted in hospital every month for blood trasfusion. It is psychologically very traumatic to both the patient & the parents of getting admitted every month in hospital for blood transfusion

Pain of needle prick-

During every blood transfusion, patient suffers at least two pricks. In addition they have to take injections to avoid iron overload.

Cost of the treatment-

Average cost of medical management of thalassemia is 700 USD/- per month.

Logistic problems-

Every month either of the parents have to take leave from their routine duties and make logistic arrangements for admission in hospital, finding blood donor, take the blood beg from blood bank to hospital, and again take the child back to home.

Complications-

Pain of the Thalassemic patient does not end here. They suffer many complications in their life due to disease itself and its treatment-blood transfusion.

Iron overload-

Iron overload result from the disease itself & also from frequent blood transfusions. Iron get deposited in various organs like heart, liver & endocrine glands & damage them. To reduce iron overload these patients have to take regular and adequate iron chelation therapy throughout their life.

Transfusion transmitted infections-

Risk of transmission of transfusion transmissible infections like HIV, Hepatitis B & C through blood transfusion is very high in the Thalassemia major patients. Transfusion of 'NAT tested blood' to Thalassemic patients every time almost avoids the risk of TTI.

Alloimmunization & adverse transfusion reactions-

These are common in Thalassemic patients as they are exposed to multiple blood donors. By restricting exposure to limited number of blood donors & by transfusion of only 'leukodepleted components' to Thalassemic patients, can avoid these complications.

Splenomegaly and Infections-

These are other frequent complications for which these patients may require surgical or medical help.

Thalassemia Minor-

It is carrier state. Person suffering with Thalassemia Minor carries abnormal gene of hemoglobin synthesis, but lives normal life, only presentation may be mild anaemia. Thalassemias also occur in descendants of people from Latin America and Mediterranean countries (e.g. Greece, Italy, Portugal, Spain, and others)

How does one get Thalassemia?

When both husband and wife are thalassemic minor, there are 25% chances during every pregnancy of their baby being thalaseemic major. There are 25 % chances of their baby being normal and 50% chances of their baby being thalassemic minor during eacy pregnancy.

If only one parent is thalassemic minor then there are no chances of their baby thalassemic minor. Their baby may be normal or thalassemic minor.

Prevention of Thalassemia-

If we can avoid marriage of two thalassemic minors, Thalassemia can be eradicated from the region. Thalassemia Care Centre provides blood testing facility to screen the population for thalassemia minor totally free of cost.

Economics-

1. For management of thalassemic patient
2. Average cost of managing thalassemic child is 700 USD /- per year
3. For prevention of thalassemia
4. The cost per test for detection of thalassemia minor is 3 USD /- as actual. 

How can you support to thalassemia patient?

1. By Voluntary blood donation
2. By organizing blood donation camps & motivate others to donate blood
3. By donating something from your hard earned money to thalassemia society.

You can adopt one or more Thalassemia children for financial support by donating 700 USD/- child/year to thalassemia society

-VISION-

“To eradicate Thalassemia disease from the Region by 2020. In the process serve all Thalassemia patients in our region by way of catering to various needs of these patients and thus minimize their problems and difficulties. ”

Donating Blood – You Must Know This!

 Before Blood Donation:

1. Your diet needs to contain high iron level which can be maintained by consuming iron rich foods like spinach, fish, red meat, poultry, raisins and iron-fortified cereals.
2. Taking proper sleep at night is a must.
3. You need to drink extra 16oz (or 2 glasses) of water and fluids prior to donating blood.
4. In case, you are donating platelets, check if your body is aspirin free for 2 days before the blood donation day.
5. Don’t forget to bring your donor card or any other form of identity card on the donation day.   

During Blood Donation:

1. Wear clothes with sleeves that can be raised above the elbow or simply wear sleeveless clothes.
2. Tell the phlebotomist about your preferred arm or good veins that have been used earlier for successful donations.
3. While the donation process starts relax, talk to the donors, listen to music or read a book to take your mind away from the activity.
4. After you finish donating blood, ensure you take some snack or drink some juice in the refreshment area.

After Blood Donation:

1. Since after blood donation your body is deficient of fluids, intake plenty of fruits or fruit juices over the next 24-48 hours.
2. Don’t perform strenuous physical activity like heavy weight lifting for at least 5-6 hours after donation. 
3. Lie down with feet elevated if you feel light headed, until you feel better.
4. If in case bleeding occurs after the bandage removal, apply pressure to the site and keep your arm raised for 3-5 minutes. If bleeding or bruising is seen under the skin, applying cold pack to the area regularly during the first 24 hours would be better. 
5. At last, enjoy the feeling which comes after donation that you might have saved as many as 3 people’s lives.

The gift of blood is the gift of life!

Medical technology has provided many life-saving discoveries but there is still no substitute for blood. In a medical emergency, the most important element is the availability of blood. The donated blood can help a variety of individuals: surgery patients, trauma victims, cancer patients, thalassemia patients, and individuals with anemia, premature babies and many more. Every year our nation requires about 5 Crore units of blood, out of which only a meager 2.5 Crore units of blood are available.

Who is eligible to Donate Blood?

Any healthy adult, both male and female, can donate blood, Men once in every three months and women every four months. The universally accepted criteria for donor selection are:

• Age between 18 and 65 years
• Hemoglobin: not less than 12.5 g/dL
• Pulse: between 50 and 100/minute with no irregularities
• Temperature: Normal (oral temperature not exceeding 37.5 DC)
• Body weight: not less than 46 Kg

What happens during blood donation?

Blood donation is a simple four-step process: registration, medical history and mini-physical, donation and refreshments.

• Your medical history is noted first
• A small sample of blood is collected to ensure you are not anemic
• The actual blood donation takes less than ten minutes

Does it hurts during blood donation?

There may be a little sting when the needle is inserted, which can be minimized by using a good quality needle but there should be no pain during the donation. The actual blood donation typically takes less than 10-12 minutes. 

How long will the body take to replenish the blood I donate?

The body will replace the blood volume (plasma) within 48 hours. It takes four to eight weeks to completely replace the red blood cells.

A healthy donor may donate red blood cells every 56 days, or double red cells every 112 days. A healthy donor may donate platelets as few as 7 days apart, but a maximum of 24 times a year.

What are the facts of blood components?

In modern medicine there is no room for whole blood. By making blood components the usage of blood can be optimized.

• Blood makes up about 7 percent of your body's weight.
• There are four types of transfusable products that can be derived from blood: red cells, platelets, plasma and cryoprecipitate. Typically, two or three of these are produced from a unit of donated whole blood – hence each donation can help save up to three lives.
• Donors can give either whole blood or specific blood components only. The process of donating specific blood components – red cells, plasma or platelets – is called apheresis.
• One transfusion dose of platelets can be obtained through one apheresis donation of platelets or by combining the platelets derived from five whole blood donations.
• Donated platelets must be used within five days of collection.
• Healthy bone marrow makes a constant supply of red cells, plasma and platelets. The body will replenish the elements given during a blood donation – some in a matter of hours and others in a matter of weeks.

Is the collected blood tested?

Yes every unit is tested for HIV (I and II) Virus (AIDS), Hepatitis B & C virus (Jaundice), Malaria parasite, Syphilis and also Blood groups.

What care should I take after donating blood?

• Eat and Drink something before leaving
• Drink more liquids than usual in next 4 hours
• Don't smoke for next 30 minutes
• Avoid strenuous work for the next 24 hours
• If there is bleeding from the phlebotomy site, raise the arm and apply pressure

What type of blood is needed the most?

O positive donors are needed more frequently than any other blood type. O positive is the most common blood type and most likely to be transfused. O negative donors are the “Universal Donor.” People with O negative blood are universal red blood cell donors.

How many people have O negative blood type?

Only 7 percent of people in the U.S. have O-negative blood type. O-negative blood type donors are universal donors as their blood can be given to people of all blood types. Type O-negative blood is needed in emergencies before the patient's blood type is known and with newborns who need blood.

How much is a pint of blood?

The average adult has about 10 pints of blood in his body. Roughly 1 pint is given during a donation. A healthy donor may donate red blood cells every 56 days, or double red cells every 112 days. A healthy donor may donate platelets as few as 7 days apart, but a maximum of 24 times a year.

What does it mean if your blood type is O positive?

If you fall into the O blood group, you have neither A nor B antigens on your red cells, but both A and B antibodies in your plasma. O positive is the most common blood type; O negative is the universal donor type, meaning those with this blood type can donate red blood cells to anybody.

So don’t wait just Donate!