1. 63% had autoimmune Addison’s disease.
2. 66% were female, 34% male.
3. Autoimmune diseases appear to affect females three times more often than men.
4. 62.5% reported being diagnosed within one year of symptoms being noted.
5. 80.6% saw more than one doctor for diagnosis. 34.5% required an endocrinologist for diagnosis.
6. 80.3% had salt cravings.
7. 76.6% people had autoimmune thyroid disease, as well as Addison’s disease. 69.6% had hypothyroidism, 7.1% had hyperthyroidism.
8. There was high incidence of other endocrine autoimmune disorders, seen as APS-2. Family histories represented a high incidence of genetic susceptibility to thyroid disease in these families.
9. Management of Addison’s disease is similar in North America, compared with The Netherlands. Hydrocortisone and Cortisone acetate were used more often than Prednisone and Methotrexate, as steroid replacements.
10. Florinef usage and doses were similar in North America and The Netherlands
11. 95.5% patients indicated awareness to increase medication during acute illness.
12. 89.9% wear identification bracelet/necklet like Medic Alert products.
13. Recognition that current dosages for mineralocorticoid and glucocorticoid replacement are not ideal, and don’t replicate normal adrenal physiological levels consistently.
14. Recognition that subjective responses from patients indicate that most feel ‘unwell’ despite their medication, for a good portion of the time.
15. 16 frequent complaints were listed. Fatigue topped the list, followed by weight gain, skin bruising, some non-specific complaints, and salt cravings.
16. Most people surveyed were able to work. 69.2% working, 17.2% retired, 0.3% students, 13.3% not able to work. Some sort of financial difficulties related to having Addison’s disease was noted for most people, ( 52%).
17. Frequent social complaints: nervousness travelling, loss of self confidence, reduced social life, reduced ability to accomplish tasks at home. Some 30% reported some difficulties with reading/writing capacity, nervousness shopping, inability to work outside home, fear of new experiences, and/or marital problems.
18. Areas for further research include: genetic patterns in families with a history of endocrine disorders; attention to coincidence of thyroid disorders and Addison’s disease; and glucocorticoid and mineralocorticoid dosage in terms of individual under or over replacement, especially in reference to fatigue experienced by many patients.
Read the full survey result here: http://www.medhelp.org/www/nadf/
