AIHA: How to Cope with a Rare Disease Diagnosis

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It is a known fact that most rare diseases are genetic. What makes a disease rare is the number of individuals who are diagnosed with it each year. While some are so seldom encountered that there are one or two cases in all history, others have a higher chance of occurring.

About Hemolytic Anemia

One such rare disease that a larger number of people struggle with is hemolytic anemia. It occurs when red blood cells are prematurely destroyed, leading to systems such as fatigue, drowsiness, pallor and even heart conditions. Hemolytic anemia is classified into two categories, depending on the underlying cause of its apparition:

  • Hereditary hemolytic anemias, such as thalassemia, sickle-cell disease or paroxysmal nocturnal hemoglobinuria;
  • and acquired hemolytic anemia, such as autoimmune hemolytic anemia caused by diseases such as rheumatoid arthritis, leukemia or lupus.

The latter, also known as AIHA, occurs when underlying autoimmune conditions trigger an erroneous response in the body, which mistakenly identifies red blood cells as being foreign bodies and kills them off. This leads to the aforementioned symptoms, as well as other potential complications such as shortness of breath and even sleep apnea.

How to Cope

Coping with AIHA is not easy, especially when you’ve got an adjacent disorder to worry about as well. However, there are ways to handle the situation and make your life as pleasant as possible. Here are three tips on how to achieve that.

1.      Avoid Google

According to Jill Donovan, the mother of a rare disease patient, Google is your worst enemy when it comes to suffering from such a condition. This is why you need to avoid it entirely, or at least until you’ve gotten enough information from an actual medical professional to properly define what is going on with you.

Not only does googling your initial diagnosis put you at risk of acquiring some very mistaken information, but it can also induce a state of stress and panic that will worse your overall well-being. Therefore, as tempting as opening your browser right now and searching for AIHA might be, you need to refrain from doing it until you’ve got things all figured out.

2.      Connect with Others

When you’re dealing with something, communication is important. Whether it’s through attending a support group or by engaging in anonymous discussions on specialized and dedicated Internet forums, connecting with other people that suffer from autoimmune hemolytic anemia will provide you with an irreplaceable source of comfort.

Your friends and family can only understand so much since they aren’t struggling with the disease themselves. Therefore, it’s recommendable to reach out to other AIHA patients, either to exchange stories and advice or even just to vent for a bit. They will be able to provide you with the support that no one else can.

3.      Take Care of Yourself

An important part of coping with a rare disease diagnosis is taking care of yourself and remembering to always follow your treatment. First, you must always take your recommended medication exactly in the way that your doctor specified. Studies have shown that there are plenty of potential alternatives for this, such as:

  • first-line treatment involving corticosteroids;
  • second-line treatments such as a splenectomy or administering rituximab;
  • immunosuppressive medicine;
  • and supportive therapy.

Depending on your physician’s personal experience with such treatments, as well as your gender and age, choices may vary. On top of that, undergoing some lifestyle changes is also recommended for people suffering from AIHA. Changing your diet is one of the most important steps you need to take towards caring for yourself better.

Furthermore, you will need to avoid stressful situations, as well as get plenty of rest and treat possible side effects such as sleep apnea. Living with a rare disease isn’t easy, but it’s not impossible either once you dedicate yourself to it.

Conclusion

To be able to properly cope with AIHA, you need to first be aware of your full diagnosis. What caused this damaging autoimmune response in your body? What side effects of it already developed? Can the others be stopped? Refrain from going to Google for the answers to the many questions flooding your mind and wait for your doctor’s say on this.

After you’ve got this part figured out, a good next step is to reach out to people who struggle with AIHA or similar conditions. By providing each other with support, handling daily living with such a disorder won’t be as painful. And last, but certainly not least, remember to always follow your treatment and take care of yourself. Never become your own enemy.

LisaLisa

My name is Lisa and my husband Carl, and I are the owners of the Night Helper Blog. We have been married for over 30 years and we have three awesome children, plus four adorable very active grandkids. From time to time they too are contributors to the Night Helper Blog. We enjoy reading, listening to music, entertaining, travel, movies and of course blogging. The Night Helper blog was created in 2008. Since then we have been blessed to partner with many well-known Brands like Best Buy, Fisher Price, Toys "R" US., Hasbro, Disney, Teleflora, ClearCorrect, Radio Shack, VTech, KIA Motor, MAZDA and many other great brands.

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