Adrenal insufficiency awareness day 2016
Adrenal insufficiency awareness day is now in its 3rd year.
I had the idea of creating an awareness day because Molly was not diagnosed with a life threatening condition for 14 years. Despite being under some of the best consultants in the south west
A simple cortisol test and referral to an endocrinologist would have largely prevented 14 years of illness. She is lucky to be here.
Molly is now 17 and is in a wheelchair with an added chronic illness which has developed because of this.
Molly has hypopituritsm which is a pituitary condition. Her brain does not send signals to her body to produce various hormones we need to live.
This means, not only has she had a life threatening condition which we could have lost her at any time to, (adrenal insufficiency) No stress hormone. She is also only 4ft 10 because she has had no growth hormone production. This is essential not only for growth but also to sustain a healthy functioning body.
She also has had various health issues her whole life because of very low / no thyroid production. All hormones which should have been replaced from birth.
I have worked with the pituitary foundation in bringing the awareness day to life and also run an awareness group which has over 2.500 members.
My awareness posters are currently reaching 26,000 people per week. And I am now an author for the mighty, writing about the injustice and poor awareness of this condition. They have an audience of 150 million and share stories with the Huffington post CNN and other major news organisations.
This year’s awareness day is dedicated to the memory of 13 year old rowdy Williams. He died in February this year due to adrenal crisis resulting from a simple virus.
Children and adults are needlessly dying worldwide because of poor medication, late diagnosis and poor research.
Addison’s disease is probably a recognisable disease to refer to when looking up adrenal insufficiency but does have a different cause. There are also other conditions which cause AI this includes the over use of prescribed steroids.
Adrenal insufficiency awareness day is to raise awareness to all of this. Rowdy's family are totally devastated it is heart breaking to talk to his mother. I have many friends now who have this condition or who have children which do. Something has to be done to manage this better and to get more diagnosis, most people are diagnosed through post-mortem.
Chopping up and taking tablets 4 times a day to stay alive is not an acceptable medication in this day and age.
This year’s monies raised are going to the pituitary foundation. They are doing a fantastic job of producing life saving information and resources for patients.
In 2014 I wrote to all of the ambulance trusts in the UK sending them packs of information regarding adrenal crisis following a friend being refused the emergency injection in an ambulance. (death can result within 30 minutes of a trauma without an injection.
I'm glad to say that all trusts responded insuring me that their protocol was being updated. The pituitary foundation is now doing something similar to insure that emergency treatment and protocol is kept up to date.
One simple cortisol injection will save a life if they are aware of the condition.
If you would like to donate to this year's awareness day please visit . https://www.justgiving.com/fundraising/mollysmiracle
And hold a Molly s picnic on June the 6th in memory of Rowdy and the other people who have died in the past 2 years. Last year we had around 130 worldwide picnics.
We are holding a picnic prom for molly this year because she sadly had to leave school in year 10 due to illness & lack of understanding. She was so upset to see all of her friend’s pictures of the prom a few weeks ago and cried all day. This is not how an ill child who has been through so much already should feel.
For more information and to support my fight for flight campaign please visit .. https://www.facebook.com/rachelpeglersavinglivesforsterioddependants/