Patients Nutrition / Metabolism / Endocrine glands
Topic of the discussion
Posted on 13/06/2019 12:20
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 - 17/06/2019Addisons Disease- Primary Adrenal Insufficiency https://www.carenity.co.uk/forum/nutrition-metabolism-endocrine-glands/living-with-diseases-of-nutrition-metabolism-a/addisons-disease-primary-adrenal-insufficiency-2853
Posted on 17/06/2019 18:14
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
Posted on 17/06/2019 19:46
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.
Posted on 18/06/2019 09:31
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.
Posted on 18/06/2019 09:58
@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.