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Rare Anemias: My Experience

Updated on July 6, 2014

Rare Anemias: My Experience

I am always being tested for types of anemia most people have not heard of.

Throughout the past two decades, I have been told that I should have anemia. However, this was not the same type of iron-deficiency anemia experienced by friends, classmates, or coworkers. Instead, I have always been on the lookout for an anemia type that is a bit more intense. Along the way, I learned about unique types of anemia and what to do if you start showing signs.

Diagnosed as a potential anemia patient

My first diagnosis as a potential rare anemia-sufferer started when I got back a bad blood bank donation result. When I had tried to donate plasma, I got the same inconsistency. Namely, I had a marker for syphillis, but I did not pass a syphillis test. This led to other tests, around 1996, that have remained consistent since. Namely, over the past two decades, I have shown that I have very high Neutrophils, Cortisol, and C-Reactive Protein. Doctors think that I should have something wrong with me, like a severe infection, cancer, or inflammation, but I do have any of those symptoms.

This fiasco, while well-documented, has never been reduced or determined to be a particular disease, syndrome or ailment. Nevertheless, it is a signifier that I may start having leukemia or a rarer type of anemia if my blood work numbers continue to climb. This is when I learned about less common types of anemia and what I should look out for in case I suddenly take a turn for the worse before doctors are able to catch it when I go for checkups 3-6 times per year.

Rare types of anemia

My white blood cells are often too high, and so I am regularly tested to see if I have an infection, specific types of anemia, or leukemia. Over the years, I have learned that anemia is, by definition, is a condition where you either do not have enough blood cells or you do not produce enough iron-carrying hemoglobin by your blood cells. Most people have heard of iron-deficiency anemia, but other types of anemia are more rare.

For instance, other types of anemia are aplastic and hemolysis. Hemolysis means that the red blood cells are destroyed or removed before they are able to carry out their function. Aplastic means the body is not producing enough red blood cells. Some of the conditions related to hemolysis are G6PD and Sickle Cell Anemia.

Signs of rare anemia types

One of the primary ways I will know if I have a rare type of anemia is if my doctor tells me by taking a blood test every few months. Online, there are several reliable resources to check in case I start feeling unhealthy to see if I am showing signs of these rare anemias. For example, most professional medicine-related websites indicate severe fatigue as a key sign of any anemic condition. Other lesser known indicators of rarer anemias are excessive bruising, skin rashes on the legs, upper abdominal pain, headaches, shortness of breath, chest pain, or pale skin.

Tips for managing rare anemias

One of the biggest struggles with any type of anemia is how it can be high-maintenance to manage with lifestyle. Overall, the fatigue is a main issue that causes a person suffering with anemia to struggle to work or get basic chores completed. Online, most tips for anemia are related to the common iron-deficiency type. Nevertheless, there are several tips for rare types of anemia as well. For instance, if you have aplastic or hemolytic anemia, you should avoid strenuous exercise, get your teeth cleaned regularly, avoid sick people, and take extra precautions against infection.

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