National Adrenal Diseases Foundation

Minutes

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June 13, 2015 Minutes

First Quarterly Meeting of the East Tennessee Adrenal Support Group

The meeting was held in the library conference room at the University of Tennessee Medical Center in Knoxville TN. The meeting was called to order by Frank, who was diagnosed with Addison’s disease in 2010. Ross, the co-coordinator was also present. In total 8 persons from East Tennessee, Georgia and North Carolina were in attendance.

An opportunity was given to each attendee to tell their name and share information about their experiences with and concerns about Addison’s disease. Since no physician was present for the meeting, attendees were reminded that all information shared was strictly informational and not a recommendation of any kind.

Information Distributed

  1. Patient oriented information on adrenal disease. Copies of multiple articles were include in the packets.
    1. National Adrenal Disease Foundation site is excellent. Tools for life section is especially helpful.
    2. UK Addison's Disease Self Help Group was one of the original sources of patient oriented information.

Identifying Information about Addison's disease for First Responders and ER Personnel.

  1. A British Medical Journal editorial indicates that 15 % of person with Addison’s disease will die because of lack of experience with the disease by hospital personnel. (click on print to get copy of article)

Identifying Addisonians for first responders and ER Personnel

    1. Dept. of Transportation Yellow DOT Program - yellow dot on rear window - yellow folder in glove box with emergency info - site tell where to pick up free packets.
    2. Medic Alert bracelet.
    3. NADF publications
    4. UK Addison's Disease Self Help literature-Surgical Guidelines.

Understanding Stress

  1. “The Nature of Stress" by Dr. Hans Selye” was distributed.

Topics of particular Interest

Personal experiences with various drugs and dosages

  1. Question was raised about the difference between Solu-Medrol and Solu-Cortef.
  2. An observation was made that the same drug manufactured by different companies can vary in effectiveness. If the pharmacy changes to another source, the patient should be mindful of any changes that may occur.

Doctor's responses to questions and expressed concerns.

  1. Several attendees believe their doctors do not understand their needs.
  2. Some attendees wondered why doctors seemed to have such different preference for one drug or another. Shared anecdotal information showed that patient's experiences were as varied as the dosages prescribed. One attendee expressed frustration with a physician’s refusal to change a .05 mg dosage of Fludrocortisone. Again the issue that the physician did not understand the need for flexibility in dealing with each day in the life of patients with Addison’s disease.
  3. Discussion continued about various drugs and patient's experiences with their doctors.
  4. An experience with hospitalization for surgery was shared. The ability of the patient to control their regular regimen of hydrocortisone and/ prednisone was prohibited. The patient lost the ability to respond to their changing stress levels and need for an additional dose (or partial dose). Finally, the doctor treating the patient for Addison’s was able to remedy the situation. How much better it would have been if the hospital personnel had understood the need and helped resolve the issue.
  5. Additional concern was expressed about going to the emergency room. Several attendees had bad experiences or knew someone who had. There is a definite need to raise awareness of the needs of Addison’s patients when first being interviewed. Attempts by the patient to share information about the disease with hospital staff are often met with skepticism and condescension.

Additional Questions

  1. Questions were asked about Addison’s fog/mental fog. Several attendees have had experience with this condition. Concerns were expressed about temporary or permanent effects. This is clearly a topic for discussion at the next meeting.
  2. The effect of Addison’s on weight loss since cortisol controls the breaking down of fat. The term Gluconeogenesis was mentioned and members were encouraged to Google it as a means of understanding better a significant process in the human body and Addison’s disease.

LooKing Ahead

  1. The group should meet Quarterly.
  2. Saturday is the best day (among those in attendance) for meetings.
  3. Increase publicity of the new support group and meeting dates.
  4. Facilitate communication of members with others Addisonians in their local area. Each participant agreed to let their name and contact information be shared with new patients by physicians in the area.

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