Addisons Disease- Primary Adrenal Insufficiency

/static/themes-v3/default/images/default/home/bg-generic.jpg?1516194360

Patients Nutrition / Metabolism / Endocrine glands

4 answers

36 views

Topic of the discussion



Posted on

Hi, I’ve just been diagnosed  Addisons Disease- Primary Adrenal Insufficiency. It’s a rare condition- 8.400 people in the UK. Are you one of them? Would love to hear from you.

Beginning of the discussion - 17/06/2019

Addisons Disease- Primary Adrenal Insufficiency

• Community manager
Posted on

@aglowlady Hello,

I'm sorry to hear about your diagnosis but we do have some members who have connected Addison's disease to their profile. You can search members by typing the disease into the search bar and choosing "members" from the left hand side :)

Do any members have any words of encouragement or support when facing the diagnosis of this disease? Please share, we are here to support each other! :)

@wytchypoo@Sammicatx @cathn123@Deano161@Philip1958@n-paul@julia Anne@Valentine@Beejay@madzippy@Madhouse34@norton@Tracy64xxx@Derbyshire@lizzieanne@Lindybee@Thehappywheezer@Dooher2007@tmch54@tas213‍ 

Addisons Disease- Primary Adrenal Insufficiency


Posted on

Hello,

I was first diagnosed about 8-10 years ago and what I find deeply disturbing is the lack of knowledge by NHS staff of this rare disease, and when I have an Addisonian crisis I have had ambulance staff refuse to administer my medication all due to either the lack of knowledge or the lack of care.

This has happened to me on at least 3 different occasions and when we complain it's the same old excuse we do not know enough about this disease, the only way forward to ensure all people with this rare disease are treated correctly is more nurses and Doctors learning about this disease. 

Addisons Disease- Primary Adrenal Insufficiency


Posted on

Hi Phillip,  I live in Kent. Were you given your own injection/ tablet pack? So you can self medicate before calling for the ambulance. You can also register yourself with the ambulance service so they’ll take your request seriously. 

I pray you’ll have better care in the future. 

Addisons Disease- Primary Adrenal Insufficiency

• Community manager
Posted on

@Philip1958 @aglowlady Hi Philip, thank you for sharing...facing a rare disease is difficult. I know @Izzyjamal‍ has had a hard time dealing with the NHS concerning her rare disease.

Have either of you read our recent article for World Rare Disease day? You can read it by clicking HERE and you might find it informative.