01 March 2020
Yesterday was Rare Disease Day, a chance for the rare disease community to join forces to raise awareness of rare diseases and their impact on people's lives.
We are delighted that our article "Think Addison's disease - save a life", written to raise awareness of the subtle symptoms of Addison's and the national guidance to diagnose Addison's, is featured in today's Guardian newspaper Rare Diseases supplement!
This is part of our aim to tackle a lack of understanding of Addison's and the delay in diagnosis so many of us have experienced, and marks the start of our collaboration with CoMICs on our diagnosis poster and 3-part video series.
The ADSHG are featured alongside Genetic Alliance UK, Same but Different, Rare Disease International, Great Ormond Street Hospital Children's Charity and EURORDIS, so we are in excellent company!
Think Addison's disease - save a life
The aim of our article is to highlight to the general population how Addison's disease can affect people of all races and ages, and the symptoms may be subtle. Within the article, we explain how the initial symptoms of Addison’s are non-specific and can fit other conditions. Individually, each symptom may be discounted or explained away, whilst the person remains undiagnosed.
People still die of adrenal crisis, which is entirely preventable.
Healthcare professionals need to think of Addison’s and recognise it earlier so that a diagnosis can be made before a crisis develops. In our article, we link to national guidance, highlight the new steroid emergency card and diagnostic tests to undertake if Addison's is suspected. Delayed diagnosis in rare diseases is not uncommon, as highlighted in the new UK Rare Disease Framework.
This is why we must continue with our mission to raise awareness.
Watch "Addison's Disease Episode 1: What is Addison's Disease?"
To accompany our image, watch the first in our new 3-part video series, where we'll be looking at:
- What is Addison’s disease?
- How to diagnose and treat Addison’s disease.
- What is an adrenal crisis, and how is it managed?
Thank you to the expert Endocrine review panel for the video included ADSHG Trustee Dr Helen Simpson and our Clinical Advisory Panel (CAP) member Professor Wiebke Arlt, and to the Society for Endocrinology for also endorsing this work.
Sharing the voices of others living with Addison’s and adrenal insufficiency
Over on our Instagram account, we shared some of the amazing people in our community with their quotes about their rare reality of living with Addison's and adrenal insufficiency. We want you to know you are not alone.
Thank you to everyone who shared their story with us to raise awareness on Rare Disease Day!