Question about thalassemia and organ donation

madwife2002, BSN, RN · Mar 8, 2005

I would seriously doubt it, but have you tried the UK web sites, i will try and find one for you.

Kyriaka · Mar 8, 2005

I have several family members with this. But they dont appear to have anemia, they are.

If you dont mind me asking, are you Greek?

I deal with this issue with Lyme disease. What is legal is sometimes not ethical. Even if there no studies that prove transmission, is it ethical to take the chance of passing the disease on to others?

I personally dont think it is. I feel more strongly that the way to help others is to donate an organ to research to find a cure for an illness, rather than passing it on.

tbal · Mar 9, 2005

Hi! I am also interested in response to your question. I also have thalessemia minor. But the nursing supervisor at the red cross here in connecticut told me that I could donate blood as long as I did not have thalessemia major. I found out I had thalessemia minor when I was 16 years old during a routine physical. I am african american. I have never donated blood because I was not sure if what she said was correct. My bloodwork is always abnormal so I would not want to risk passing thalessemia to anyone else. I am really not sure about the organ donation issue.

Teresa

LPN_mn · Mar 9, 2005

The doctors are very puzzled because none of my family is of mediterreanen (spelling) descent. We are German and Dutch. My mother was diagnosed many years ago and we 3 girls have it. My 2 brothers do not. I have 4 children both of my girls have it and 1 son. It is a 50/50 chance of inheriting the disoder. I have told all my children that they cannot give blood or donate their organs d/t this. I just wanted to make sure that my info is correct. I should correct myself on the anemia. I am anemic but iron supplements will not help. I get very tired at times but it does not interfere with my daily living.

Kyriaka · Mar 10, 2005

The doctors are very puzzled because none of my family is of mediterreanen (spelling) descent. We are German and Dutch. My mother was diagnosed many years ago and we 3 girls have it. My 2 brothers do not. I have 4 children both of my girls have it and 1 son. It is a 50/50 chance of inheriting the disoder. I have told all my children that they cannot give blood or donate their organs d/t this. I just wanted to make sure that my info is correct. I should correct myself on the anemia. I am anemic but iron supplements will not help. I get very tired at times but it does not interfere with my daily living.

________________

My understanding (such as it is) is that the blood cells die early. Meaning a normal blood cell lives for 120 days.

In thalassemia the blood cells never truly mature and therefore cannot carry a full amount of oxygenated blood.

Genetics is an intersting thing. Tay Sach is normally known as a "Jewish" disease. Tay Sachs is also seen in French Canadian's along in the St. Charles area.

Maple Syrup disease in seen in the Amish (most have the same genetic pool).

My personal opinion, is that these things happen when there is a small pool of genes. This has alot to do with lets say if your family was in a specific region of Germany for a long time.

Thalassemia is a problem in Greeks because many Greeks refuse to marry non Greeks. Period. They even refuse to marry someone who is 1/2 Greek. Thus, the pool is very limited.

mwbeah · Mar 11, 2005

Thalassemia is actually a group of inherited diseases of the blood that affect a person's ability to produce hemoglobin, resulting in anemia. Hemoglobin is a protein in red blood cells that carries oxygen and nutrients to cells in the body. About 100,000 babies worldwide are born with severe forms of thalassemia each year. Thalassemia occurs most frequently in people of Italian, Greek, Middle Eastern, Southern Asian and African Ancestry.

The two main types of thalassemia are called "alpha" and "beta," depending on which part of an oxygen-carrying protein in the red blood cells is lacking. Both types of thalassemia are inherited in the same manner. The disease is passed to children by parents who carry the mutated thalassemia gene. A child who inherits one mutated gene is a carrier, which is sometimes called "thalassemia trait." Most carriers lead completely normal, healthy lives.

A child who inherits two thalassemia trait genes - one from each parent - will have the disease. A child of two carriers has a 25 percent chance of receiving two trait genes and developing the disease, and a 50 percent chance of being a thalassemia trait carrier.

Most individuals with alpha thalassemia have milder forms of the disease, with varying degrees of anemia. The most severe form of alpha thalassemia, which affects mainly individuals of Southeast Asian, Chinese and Filipino ancestry, results in fetal or newborn death.

A child who inherits two copies of the mutated gene for beta thalassemia will have beta thalassemia disease. The child can have a mild form of the disease, known as thalassemia intermedia, which causes milder anemia that rarely requires transfusions.

Thalassemia Major: A Serious Disorder

The more severe form of the disease is thalassemia major, also called Cooley's Anemia. It is a serious disease that requires regular blood transfusions and extensive medical care.

Those with thalassemia major usually show symptoms within the first two years of life. They become pale and listless and have poor appetites. They grow slowly and often develop jaundice. Without treatment, the spleen, liver and heart soon become greatly enlarged. Bones become thin and brittle. Heart failure and infection are the leading causes of death among children with untreated thalassemia major.

The use of frequent blood transfusions and antibiotics has improved the outlook for children with thalassemia major. Frequent transfusions keep their hemoglobin levels near normal and prevent many of the complications of the disease. But repeated blood transfusions lead to iron overload - a buildup of iron in the body - that can damage the heart, liver and other organs. Drugs known as "iron chelators" can help rid the body of excess iron, preventing or delaying problems related to iron overload.

Thalassemia has been cured using bone marrow transplants. However, this treatment is possible only for a small minority of patients who have a suitable bone marrow donor. The transplant procedure itself is still risky and can result in death.

mwbeah · Mar 11, 2005

This link might help with your question

http://www.redcross.org/services/biomed/0,1082,0_557_,00.html

LPN_mn · Mar 12, 2005

Thanks for all that replied to my messege. I am in my early 40's and to tell the truth have started thinking alot about organ donation since my 15 yr old daughter started asking questions. The doctor's don't seem to know very much about this and I am always on this website learning alot from other nurses, so thought I would try to find out if anyone else knew anyting. Thanks again for your posts.