What is Cooley’s Anemia?
Cooley’s anemia (thalassemia) is a hereditary blood condition that occurs when your body doesn’t produce enough hemoglobin, a protein that’s a vital component of your red blood cells. (x)
If you have low hemoglobin levels, the red blood cells in your body don’t work efficiently. It’s significant health concern because red blood cells transport oxygen to all the body’s cells to keep them functioning correctly. When there are fewer red blood cells, the blood carries a smaller amount of oxygen to all of your body’s cells, which can cause breathlessness and fatigue. It’s a disorder known as anemia. People with Cooley’s anemia may have severe or mild anemia. Severe anemia can destroy organs and even be fatal. (x)
About 100,000 babies are born every year with severe cases of Cooley’s anemia. (x) The condition is most common in people of African, South Asian and Mediterranean ancestry.
History of Cooley’s Anemia
First discovered in 1925 by Dr. Cooley, the disease came to the forefront of the medical industry alongside sickle cell anemia as the most widespread single-gene inherited hemoglobin health concerns. The theory is that it did not begin in the Mediterranean, but in the United States, based on clinical attributes hidden by malaria — has a similar manner and characteristics. Based on the changes in the demographics, Cooley anemia is now a significant health concern worldwide. (x)
Symptoms of Cooley’s Anemia
Symptoms of Cooley’s anemia appear because of insufficient oxygen in the bloodstream. The severity of thalassemia symptoms can range from mild or severe to life-threatening. (x)
Silent carriers of alpha thalassemia rarely have symptoms of the condition. It’s because they lack the protein called alpha-globin, which is so insignificant that the hemoglobin in your body still usually works. (x)
People with the beta or alpha thalassemia traits may have mild anemia. (x) But many people with these forms of thalassemia don’t always have symptoms.
Mild-Moderate Anemia & Other Symptoms
People with beta-thalassemia intermedia can have mild or moderate anemia. They may also have other conditions like:
- Bone Health Concerns
The bone marrow refers to the spongy matter inside bones that produces blood cells. Cooley’s anemia can make the bone marrow expand. When it expands, the bones get wider than usual, making them brittle and easy to break. (x)
- Stunted Growth and Late Puberty
Anemia may slow down or delay a child’s growth and development. (x)
- Cause an Enlarged Spleen
Thanks to the spleen, your body fights off infections and gets rid of unwanted material. When you have Cooley’s anemia, your spleen has to work extra hard. This then makes the spleen grow more prominent than expected, which worsens the anemia. Doctors take out the spleen when it gets too big. So, you work with your medical doctor to make sure your spleen stays as normal as possible. (x)
Severe Anemia & Other Symptoms
People with Cooley’s anemia or hemoglobin H disease have severe thalassemia. In fact, symptoms usually occur within the first 24 months of your life. They could include severe anemia and other health conditions like:
- Bone problems (particularly with facial bones)
- An enlarged spleen, heart, or liver
- Jaundice (yellowish tinge on the skin or whites of eyes)
- Slowed growth and late puberty
- Poor appetite
- Dark urine (a sign of red blood cells breaking down)
- A pale, listless appearance
Causes of Cooley’s Anemia
Two proteins make up hemoglobin — alpha-globin and beta-globin. Cooley’s anemia occurs when you have an abnormality in the gene that controls the production of either of these proteins.
There are two significant forms of thalassemia (Cooley’s anemia): (x)
- Alpha Thalassemia
Alpha thalassemia happens when one or more genes associated with alpha-globin changes (mutated) or are missing. Alpha thalassemia most often occurs in people from the Middle East, Southeast Asia, Africa, India and China. (x)
There are many types of thalassemia, and all these types have various subtypes. Thalassemia major and thalassemia minor appear in both beta and alpha thalassemia.
To have thalassemia major, both of your parents must have passed on this gene defect. In contrast, thalassemia minor can develop even if you get the defective gene from only one parent. People with thalassemia minor are carriers of the condition. In most cases, they have no symptoms.
- Beta thalassemia
Beta Thalassemia occurs when similar gene flaws affect the production of beta-globinOn the other hand, beta-thalassemia most often occurs in people with Mediterranean ancestry. It appears in Africa, Iran, the Arabian Peninsula, Southern China and Southeast Asia. (x)
Treatment for Cooley’s Anemia
Cooley’s anemia treatment depends on the severity and type of condition. So, in mild cases, the individual may feel exhausted and not require treatment. But in a more severe case, the organs may not receive adequate oxygen. Possible treatments are:
- Blood Transfusions
You might need a blood transfusion regularly. With a transfusion, you receive blood or components of blood your body requires, such as hemoglobin. How frequently you will need transfusions may vary. Some people get a transfusion every few weeks. As you age, your transfusion schedule may change.
Blood transfusions are essential for people with Cooley’s anemia. But they may cause excessive iron in the bloodstream. (x) That may cause problems with blood sugar, the liver and the heart. If you receive transfusions, your doctor will discuss with you whether you need medication that can help get rid of excess iron from your blood.
In some cases, blood transfusions cause health concerns like low blood pressure, chills, nausea, high fever and diarrhea. If you’ve got any of these symptoms, please see your doctor. Even though blood donated in the United States is very safe, there’s a remote possibility that a transfusion could give you an infection.
- Iron Chelation Therapy
Hemoglobin is a protein loaded with iron. Because of this, regular blood transfusions may cause an iron buildup in the blood, which is known as iron overload. It can damage the heart, liver, thyroid, pancreas and other body organs. (x) So, doctors use iron chelation therapy to remove extra iron from your body to avoid this damage. Doctors use two medicines in iron chelation therapy. (x)
Deferasirox is a medication taken once a day. Side effects include: nausea, headache, diarrhea, vomiting, tiredness and joint pain.
Deferoxamine is in liquid form and doctors slowly give beneath the skin, typically with a small movable pump used overnight — the treatment takes time and may be a bit painful while causing side effects such as problems with hearing and vision.
- Stem Cell Transplant
A stem cell transplant of the blood and bone marrow replaces defective stem cells with donated healthy ones. Stem cells are cells within the bone marrow that produce red blood cells and other kinds of blood cells. In fact, the only treatment that may cure Cooley’s anemia is a stem cell transplant. (x) But only a few people with severe thalassemia will find a suitable match, and the transplant itself is a dangerous procedure.
Today, better treatments allow you with moderate or severe thalassemia to live longer. Therefore, you can handle complications that develop over time. A vital part of thalassemia management is treating complications that might occur. Your doctor may require treatment for liver or heart diseases, osteoporosis, infections and other health conditions.
Managing Cooley’s Anemia
Doctors can appropriately manage Cooley’s anemia as a treatable condition with chelation therapy and blood transfusions. So if you have thalassemia, you’ll need to get regular medical care from a doctor. They focus on treating you with thalassemia, or a hematologist, someone who treats disorders or diseases of the blood, can administer the appropriate treatment.
If your doctor prescribes either chelation therapy or blood transfusions, the most important thing you can do is follow their blood transfusion and chelation plan. The plan should prevent severe anemia and possible organ damage due to iron overload, respectively.
Healthy Choices for Thalassemia Patients
We all need to lead a healthy lifestyle. But for people living with Cooley’s anemia, managing the condition and making healthy choices makes up a healthy lifestyle. (x)
If you have thalassemia, other healthy choices include eating nutritious meals, exercising, keeping vaccinations up to date and building positive relationships.
Vaccines as a Prevention
Vaccines are an effective way to prevent many severe infections. In fact, adults and children with Cooley’s anemia should receive all the recommended vaccinations, including flu vaccinations. If you have Cooley’s anemia, you are “high risk” for some infections, particularly if doctors removed your spleen, and will need to stick to a particular schedule for these vaccines:
- Haemophilus Influenzae type b
- Meningococcal vaccines
- Pneumococcal vaccines
Nutrition for Cooley’s Anemia
Eating healthy foods is essential. Specifically, your diet should be low in fats and high in vegetables and fruits to help you receive the vital nutrients your body needs. However, limit foods rich in iron, as too much iron can accumulate in people’s blood with Cooley’s anemia. Iron is in fish, meat and certain vegetables, including spinach. Other products, such as orange juice and cereal, may have extra iron. If you have Cooley’s anemia, talk to your doctor about whether or not you should limit your iron intake.
Exercising With Cooley’s Anemia
Exercise is a vital part of an overall healthy lifestyle and helps produce better results. While some people with Cooley’s anemia may struggle with taking part in vigorous exercises, many people with the condition can take part in moderate forms of exercise, including walking, running and biking. If you have thalassemia and issues with your joints, there are various forms of low-impact physical activities to pick from, including swimming, water aerobics and yoga. Therefore, discuss with your physician what level of exercise would be perfect for you.
Supplements for Cooley’s Anemia
The following supplements can help manage symptoms of Cooley’s anemia. Visit with your health care provider whenever you start a new supplement. Supplements for Cooley’s include:
Astragalus has no standardized dosage, but you can discuss with your doctor how much you’ll need to take as well as how often.
- Folic Acid
The B vitamin folic acid helps you make healthy red blood cells. Because of this, your doctor can suggest taking folic acid supplements along with blood transfusions or chelation therapy.
Take 500-1,000 micrograms of folic acid daily. But don’t exceed the upper limit. Also, pregnant women should take 300-400 milligrams daily.
The antioxidant amino acid L-carnitine contributes to cognitive, muscular and cardiovascular health. It can increase energy and endurance. Take 500 milligrams of L-carnitine base powder four times daily.
- Milk Thistle
Milk thistle is a natural anti-inflammatory and antioxidant that promotes liver function and heart health. It can also enhance skin health. Take 250 milligrams of milk thistle daily, or as your physician directs you. You can take it with or without meals.
- Vitamin E
This fat-soluble antioxidant promotes healthy hair and skin and helps normalize cholesterol levels. Take 500-1,000 milligrams of vitamin E daily with food.
Wheatgrass is an anti-inflammatory and antioxidant that fights free radical damage and chronic inflammation. Take 4,000 mg or a little over one tablespoonful once a day or as directed by your doctor.
Zinc is a mineral that contributes to heart, eye, immune and bone health. It can also help with blood pressure and wound healing. Take 100 milligrams of zinc orotate powder 1 to 3 times a day, or as your doctor instructs you. For the most precise measuring results, get a milligram scale.
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The Bottom Line
You can get Cooley’s anemia genetically based on your ethnic origin, so there may be no way of preventing it if you are genetically prone to it. However, you can manage the condition you have with healthy lifestyle choices and proper supplementation. Your goal is to manage its symptoms.
But if the condition worsens, various treatments can apply. If you are afraid you might have Cooley’s anemia or have a family history of the disease, consult your doctor immediately to advise what lifestyle changes are necessary.
These statements have not been evaluated by the Food and Drug Administration. These products are not intended to diagnose, treat, cure or prevent any disease.