Patients Nutrition / Metabolism / Endocrine glands

Addisons Disease- Primary Adrenal Insufficiency

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aglowlady

13/06/2019 at 12:20

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aglowlady

Last activity on 21/08/2024 at 13:54

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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.

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JosephineO

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17/06/2019 at 18:14

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JosephineO

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Last activity on 15/07/2024 at 09:21

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989 comments posted | 4 in the Nutrition / Metabolism / Endocrine glands Forum

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@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

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Josephine, Community Manager

Addisons 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 2019-06-17 18:14:26

Unregistered member

17/06/2019 at 19:46

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.

aglowlady

18/06/2019 at 09:31

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aglowlady

Last activity on 21/08/2024 at 13:54

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59 comments posted | 2 in the Nutrition / Metabolism / Endocrine glands Forum

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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.

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JosephineO

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18/06/2019 at 09:58

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JosephineO

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989 comments posted | 4 in the Nutrition / Metabolism / Endocrine glands Forum

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@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.

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Josephine, Community Manager

Addisons Disease- Primary Adrenal Insufficiency

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