Do you suffer from Addison's disease or adrenal insufficiency (directly or in the family)? Last year, we started an Endocrine Awareness Project to raise awareness of the existing link between ALD and idiopathic Addison's disease or adrenal insufficiency [1].
However, we don't know exactly how many families experience diagnosis of idiopathic Addison's disease. Whether you are directly affected, or have a family member affected, please take two minutes to complete our short survey: surveymonkey.com/r/2NFTR8M.
Your involvement will help us to build a strong case to Endocrinologists in the UK to help increase number of patients with idiopathic Addison's disease tested for the ALD gene. Increasing diagnosis rate is important, as we have found that it takes more than a year for some families - which is not acceptable [2].
Do you agree? Then, please help us build a strong case to Endocrinologists:
If you would like to share your story about diagnosis, please feel free to share them below.
NOTES
[1] ALD Life Link between ALD and Addison's disease aldlife.org/about-us-what-w...
[2] ALD Life HealthUnlocked Poll healthunlocked.com/aldlife/...