The goal

What did scientists want to find out?

PNH is a rare disease. Scientists are still learning how the symptoms of PNH affect people’s daily lives.

In this study, the researchers measured the level of fatiguefatigueA feeling of being overtired or exhausted, with low energy and a desire to sleep, which interferes with normal daily activities. Fatigue is one of the most common symptoms of PNH. that people with PNH experienced and compared it against other bone marrow diseases. The people in the study had one or more bone marrow failure diseases: myelodysplastic syndrome (MDS)Myelodysplastic syndromes (MDS), aplastic anemia (AA)Aplastic anemiaA rare blood disease that is a known risk factor for PNH. Aplastic anemia occurs when a person’s bone marrow does not make enough new blood cells. Some scientists believe that aplastic anemia weakens the body’s bone marrow, which then affects its ability to produce healthy red blood cells. People with PNH can share symptoms with those that have aplastic anemia, such as low blood cell counts. and PNHParoxysmal nocturnal hemoglobinuria (PNH)A rare and chronic disease in which the body attacks and destroys its own red blood cells, which may result in anemia and blood clots. This process, called hemolysis, can lead to symptoms including fatigue, weakness, headaches, chest pain, abdominal pain and others.. These 3 diseases have similar effects on the body, including fatigue.

The method

How, where and when did they look for information to analyze?

The AA and MDS International Foundation — AAMDS for short — is a nonprofit group that supports people with bone marrow disorders and their families. They surveyed people with bone marrow disorders about how often they experienced certain symptoms.

Researchers used surveys from 303 people, and focused on the topics of fatigue, pain and emotional challenges, including depression, anxiety and stress.

  • Fatigue

  • Pain

  • Emotional challenges

The findings

What did the researchers learn?

The researchers used descriptive statistics to measure the levels of fatigue, pain and emotional challenges taken from the surveys. Descriptive statistics are a way of reporting information in a way that is simple and easy to understand.

The researchers found that:

  • Overall

    There were no significant differences among the groups studied.

  • Fatigue

    Fatigue for the groups studied was considered severe.

  • Stress

    Scores for stress were normal.

  • Depression

    Scores for pain and depression were mild.

  • Anxiety

    Scores for anxiety were moderate.

  • Quality of life

    Across all groups studied, the average score for quality of life was 68 out of a maximum of 104, which is lower than average scores for a healthy population.

  • Strategies for fatigue

    The 3 strategies most people found helpful for fatigue were preserving energy, physical activity, and naps.

The takeaway

What did the researchers conclude from the study?

  • Many individuals with rare bone marrow disorders experience severe fatigue
  • Strategies like rest, naps and regular exercise helped many, but may not work well for everyone
  • More study is needed to learn whether these and other strategies help to significantly lower fatigue
Please note: The information on this page is meant to be informational only and is not intended to replace medical advice. Always talk to your healthcare provider about any questions you may have on PNH, its symptoms or treatment.
  • Title: Fatigue, symptom burden, and health‐related quality of life in patients with myelodysplastic syndrome, aplastic anemia, and paroxysmal nocturnal hemoglobinuria
  • Journal: Cancer Medicine, February 2019; 8(2):543-553
  • Written by: Escalante, C. P., Chisolm, S., Song, J., Richardson, M., Salkeld, E., Aoki, E., & Garcia-Manero, G.