AIHA and Day to Day Living and Resting. What’s It Like?

While more effort has been made to create increased awareness about diseases that are rare, they remain uncommon. The majority of caregivers are not conversant with the challenges that come with these conditions, hence may not take care of the affected patients as expected. The theme for Rare Disease Day in 2017, for example, was dedicated to helping researchers work with patients, caregivers, and families in maximizing the chances for success in research.

One such disease is autoimmune hemolytic anemia (AIHA) where the immune system produces antibodies that destroy the red blood cells. Also known by other names like warm agglutinin disease and cold agglutinin disease, the condition causes the red blood cells to reduce significantly, leading to the development of hemolytic anemia. Next is a look at what the causes and symptoms of this disease are, as well as a discussion on how people with sleeping problems can manage the disease.

Causes of AIHA

There are two types of AIHA- idiopathic or primary and secondary AIHA. Secondary AIHA results from medication or underlying ailments like arthritis, thyroid disease, lupus, long-term kidney disease, and cancers affecting the immune system. The condition may also develop after a bone marrow transplant or the using penicillin.

This kind of rare disease may develop gradually or occur suddenly. The cause of primary AIHA remains unknown. While it may be rare, some patients suffer from inherited AIHA, a lifetime condition that requires continuous treatment. However such patients may get relief if its cause is determined and corrected.


People suffering from AIHA exhibit a range of symptoms. Most of these signs are common among anemic patients, and they include dyspnea, heart failure, angina, fatigue, tachycardia, and tachypnea. AIHA can also lead to jaundice and abnormal urine color on rare occasions. A case of an eighty-year-old man who was first diagnosed with dyspnea was later found to have developed AIHA after a drastic fall in hemoglobin levels.

Patients suffering from the cold agglutinin form of this condition may also develop acrocyanosis where the toes, fingertips, ears, and nose turn blue after getting exposed to cold. This kind occurs due to auto-agglutination of the red blood cells in the capillaries of these exposed areas.

In addition to these symptoms, patients might also experience sleep apnea and other related disorders such as heavy snoring. This impedes them from getting proper rest, thus accentuating fatigue and breathing problems. While this is more of a consequential, but separate condition, it is still linked with AIHA.


The kind of treatment administered depends on:

The type of AIHA diagnosed

The severity of the disease

The medical history, age, and health of the patient

The patient’s tolerance to particular medication

General treatment options include transfusion therapy, discontinuing medicines like penicillin, ampicillin, quinine, methicillin, cephalothin, and quinidine. Note that blood transfusion is only necessary where AIHA cannot be treated.

The doctor may also recommend cortisone-like drugs to weaken the patient’s immune response to help improve the condition. It is the first type of treatment for a patient suffering from primary AIHA. If the drugs are not effective, a surgery may be necessary.

The procedure involves removing the spleen to help reduce the rate of red blood cell destruction. A healthy spleen fights infection and removes damaged or worn out cells. However, one that is diseased may eliminate more red blood cells, causing AIHA.

Living with the Condition

While AIHA and hemolytic anemias, in general, aren’t impossible to handle, you will need to make a few lifestyle adjustments if you’re living with this disease. Both children and adults need to take proper precautions in order to ensure a longer and happier life. Here are a few pieces of advice on how to proceed.


Patients suffering from this rare condition should make various lifestyle changes to stay healthy, especially if they already have sleeping problems. Adults suffer AIHA for the long-term with frequent anemic occurrences.

To begin with, those suffering from the cold agglutinin form of the condition should keep warm and steer clear of freezing temperatures. During cold weather, they can wear scarfs, warm coats, and hats. You may also want to avoid particular activities or sports that may trigger the condition or lead to more complications.

Additionally, patients are required to monitor their hemoglobin and LDH levels, reticulocyte count and indirect bilirubin values regularly to determine the body’s response to treatment. The hemosiderin and urine hemoglobin levels should also be assessed to evaluate recovery in people who have severe AIHA. Your doctor is likely to recommend:

The use of folic acid in patients who have continuous hemolysis

Reduced use of steroids. They should only be used occasionally in low doses

Administration of oral iron where the patient has reduced levels

Avoid blood transfusion unless the patient has severe organ impairment or acute cardiopulmonary decompensation


Though AIHA is rare in kids, parents should learn how to take care of their sick young ones. The condition develops during a kid’s first year of life or his teenage years. It can, however, resolve in a few years or months, depending on its cause. A study by the University of Chicago reported that less than 0.2% kids out of 100,000 aged below twenty years have the condition.

AIHA can, however, develop into a long-term problem in kids aged less than two years and teenagers. This group is prone to relapses, and the disease is related to secondary causes of AIHA. They have similar treatment options as adults, though they may need a blood cell transfusion.

Additionally, parents should talk to the child’s caregiver about diet, treatment, and physical activity. Note that children suffering from this condition have a disrupted routine compared to healthy kids. They often become angry, tired, and cranky, hence the need to know all such signs and how to deal with them.

The Connection to Sleeping Disorders

As previously mentioned, there is a connection between autoimmune hemolytic anemia and apnea. Medical literature seldom covers the topic of sleeping disorders in AIHA patients. However, one study linked altered sleep cycles in a young patient to the condition. Due to the fact that autoimmune hemolytic anemia causes fatigue and irregular breathing, this can lead to sleep apnea.

Recent research has found a strong connection between these sleeping disorders and sickle-cell disease, a type of hereditary hemolytic anemia. The only difference between hereditary and autoimmune hemolytic anemia lies in the cause of the disease. The former has intrinsic causes such as birth defects at the cellular level, while the latter is caused by extrinsic causes such as infections. To sum it up, one you’re born with, while the other you acquire.

Due to a strongly similar symptomatology, it can thus be extrapolated that AIHA also leads to sleep disorders such as apnea. This causes irregular sleep cycles which further aggravate the condition. In order to prevent this, the resulting illness needs to be treated.

The recommended treatment for sleep apnea consists of a continuous positive air pressure device or CPAP for short. It is a mask that is placed over the nose and mouth of the patient in order to regulate breathing. More affordable alternatives include dental appliances or nerve stimulation.


Family members, teachers, caregivers, and friends should provide a support system to help the child deal with this rare disease. You may want to deal with teenagers differently by letting them have input concerning their health. This way, you encourage them to participate actively in health care.

On top of that, both adult and child patients that suffer from AIHA need to treat not only the condition itself but also all the other complications that might occur due to it. Among these, the most notable are sleep disorders such as apnea. By having all bases covered, any patient suffering from this illness can lead a somewhat normal life.

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