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aarda-posterBy Kate Frantz, IPPF Awareness Program Manager

On March 23, 2015, I attended the American Autoimmune Related Diseases Association (AARDA) National Summit in Washington, DC. This daylong event brought together leading experts in research, environment, advocacy, and patient issues to highlight the latest in autoimmune disease research and treatments. With a packed agenda full of great speakers, this served as an excellent way to honor National Autoimmune Disease Awareness Month!

The theme of the summit focused on fatigue. In fact, AARDA recently released data on how fatigue affects autoimmune disease patients, which you can read more about here. Patients at the summit described their own battles with fatigue, stressing that fatigue is more than “just being tired.” It is debilitating and interferes with daily functioning. Walking up the steps, or even lifting an arm over your head, could feel monumental.

According to AARDA data1, 89% of the 7,000+ autoimmune disease patients surveyed said that fatigue is a “major issue.” About 6 in 10 patients said that fatigue is “probably the most debilitating symptom of having an autoimmune disease.” Additionally, it can be very challenging for patients when they are not taken seriously. AARDA reported that almost 9 in 10 patients have discussed fatigue with their doctors, and about 6 in 10 say they have not been prescribed or suggested treatments.

Fatigue is very real. It is important to seek medical care and receive the necessary help to deal with fatigue. So what should you do if your doctor doesn’t take your symptoms seriously? A few tips were suggested at the meeting:2

  • Map out your fatigue by showing your doctor exactly when it started in relation to other health and/or life events. This helps a doctor see what may have caused the fatigue, or what the fatigue may be causing.
  • Telling your doctor that you are tired or fatigued might not be enough. It is recommended to tell your doctor HOW your fatigue affects your functioning. I.e. not being able to walk upstairs, cook, work, or play with your kids.
  • Then, challenge your doctor by asking, “Why can’t I function?”

This got me thinking about pemphigus and pemphigoid (P/P) patients. Does this type of profound and debilitating fatigue affect your life? We know that the average P/P patient will go 10 months in search of a diagnosis. Are they experiencing extreme fatigue AND trying to seek a diagnosis? Leave a comment below, and let us know your thoughts about the AARDA study.


 

1Newswise. March 23, 2015. Profound, Debilitating Fatigue Found to Be a Major Issue for Autoimmune Disease Patients in New National Survey: AARDA Calls on “Fuzzy,” Largely Ignored Symptom to Become a New Focus of Research. Retrieved from http://www.newswise.com/articles/profound-debiliating-fatigue-found-to-be-a-major-issue-for-autoimmune-disease-patients-in-new-national-survey

2Dr. Abid Khan. March 23, 2015. AARDA’s State of Autoimmune Disease: A National Summit. Washington, DC.