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Where do you find information about your illness?

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avatar JosephineO

JosephineO

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16/04/2019 at 14:31

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avatar JosephineO

JosephineO

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

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989 comments posted | 40 in the Good to know group

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Hello everyone!

Once your diagnosis was made, where did you find information about your condition? Is your doctor your only source of information? Do you prefer patient forums? Information sites?

Let's share our advice so that all patients have access to reliable information!

Have a good day,

Josephine

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avatar Tigger.co.uk

Tigger.co.uk

20/04/2019 at 11:42

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avatar Tigger.co.uk

Tigger.co.uk

Last activity on 09/06/2025 at 09:45

Joined in 2016


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 My diagnosis  was with my doctor or my hospital but I do have checks on my medication by pharmacy to see how I am managing with my medication but all my illnesses that I have was diagnosed with my doctor, specialist,  or general practitioner .but I do find they have all been helpful in some of my illnesses but not with them all as I didn't know I had breast cancer till a general practitioner sent me fir a ct scan also I would have never of known that I was a coeliac until a village doctor spotted my symptoms and she sent me for an endoscopy because as a child growing up I was anorexic weighed very little and suffered with anaemia but apparently all the food that I was eating was poisoning the lining of my stomach and was making me violently sick and that wasnt discovered till I was told that I was allergic to wheat and gluten and after that everything was connected to being a coeliac 

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D M A


Where do you find information about your illness? https://www.carenity.co.uk/forum/other-discussions/good-to-know/where-do-you-find-information-about-your-illness-2791 2019-04-20 11:42:20

avatar Tigger.co.uk

Tigger.co.uk

20/04/2019 at 11:45

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avatar Tigger.co.uk

Tigger.co.uk

Last activity on 09/06/2025 at 09:45

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768 comments posted | 100 in the Good to know group

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I was 49 years when I found out 

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D M A


Where do you find information about your illness? https://www.carenity.co.uk/forum/other-discussions/good-to-know/where-do-you-find-information-about-your-illness-2791 2019-04-20 11:45:47

avatar Tigger.co.uk

Tigger.co.uk

20/04/2019 at 11:47

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avatar Tigger.co.uk

Tigger.co.uk

Last activity on 09/06/2025 at 09:45

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768 comments posted | 100 in the Good to know group

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 My diagnosis  was with my doctor or my hospital but I do have checks on my medication by pharmacy to see how I am managing with my medication but all my illnesses that I have was diagnosed with my doctor, specialist,  or general practitioner .but I do find they have all been helpful in some of my illnesses but not with them all as I didn't know I had breast cancer till a general practitioner sent me fir a ct scan also I would have never of known that I was a coeliac until a village doctor spotted my symptoms and she sent me for an endoscopy because as a child growing up I was anorexic weighed very little and suffered with anaemia but apparently all the food that I was eating was poisoning the lining of my stomach and was making me violently sick and that wasnt discovered till I was told that I was allergic to wheat and gluten and after that everything was connected to being a coeliac I was 49 years old when I found out being a coeliac 

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D M A


Where do you find information about your illness? https://www.carenity.co.uk/forum/other-discussions/good-to-know/where-do-you-find-information-about-your-illness-2791 2019-04-20 11:47:15

avatar Jontt44

Jontt44

Edited on 07/05/2019 at 17:08

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avatar Jontt44

Jontt44

Last activity on 08/01/2025 at 11:07

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53 comments posted | 9 in the Good to know group


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My Diagnosis of numerous conditions has been by G.Ps. Consultants and a Heart Surgery Professor. I don’t look up any of my conditions as friends who do so always consider the combination of worst factors? 

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Terencjtt


Where do you find information about your illness? https://www.carenity.co.uk/forum/other-discussions/good-to-know/where-do-you-find-information-about-your-illness-2791 2019-05-07 17:03:22

avatar Tigger.co.uk

Tigger.co.uk

08/05/2019 at 09:53

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avatar Tigger.co.uk

Tigger.co.uk

Last activity on 09/06/2025 at 09:45

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I am off to hospital today to see about my lymphoedema I don't know what they are going to do so I am feeling a little nervous lots of love tiggs 

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D M A


Where do you find information about your illness? https://www.carenity.co.uk/forum/other-discussions/good-to-know/where-do-you-find-information-about-your-illness-2791 2019-05-08 09:53:49

avatar JosephineO

JosephineO

Community manager
21/05/2019 at 10:14

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avatar JosephineO

JosephineO

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

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989 comments posted | 40 in the Good to know group

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@Jontt44 @Tigger.co.uk Thank you both for sharing!

How did the hospital go, Tiggs? We are wishing you the best from Carenity!

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Josephine, Community Manager


Where do you find information about your illness? https://www.carenity.co.uk/forum/other-discussions/good-to-know/where-do-you-find-information-about-your-illness-2791 2019-05-21 10:14:03

avatar Tigger.co.uk

Tigger.co.uk

21/05/2019 at 12:29

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avatar Tigger.co.uk

Tigger.co.uk

Last activity on 09/06/2025 at 09:45

Joined in 2016


768 comments posted | 100 in the Good to know group

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Ok have to wear a different arm stocking and glove for my lymphoedema had a phone call for my emphysema that is going to be middle over June but haven't heard yet when seeing my councillor tomorrow for my anxiety PTSD and low mood depression, and Friday have to see my gastroenterologist for my coeliac disease, and then have to see my hearing specialist  and in July have to see my chest specialist and then have to see oncologists again in October so things are moving on at the moment I am helping a friend to get raffle prizes for breast cancer care and prostrate cancer as we are doing a big raffle to help raise money for these two charities so hopefully we are trying to get 60 prizes it starts the end of May till August and today I have bought some more wool to make more hats  and blankets for babies I'm going to donate for the premature baby unit for my local hospital so trying to keep myself occupied have to stop at times as I still get very tired but so far I'm doing ok 

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D M A


Where do you find information about your illness? https://www.carenity.co.uk/forum/other-discussions/good-to-know/where-do-you-find-information-about-your-illness-2791 2019-05-21 12:29:48

avatar Jontt44

Jontt44

29/05/2019 at 11:23

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avatar Jontt44

Jontt44

Last activity on 08/01/2025 at 11:07

Joined in 2015


53 comments posted | 9 in the Good to know group


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I should mention that my Asthma became uncontrollable from September 2018. (Although I see numerous consultants for various Only Health Problems. I do not allow myself to have Emotional or Phycological Problems. Similar never smoked, drink or taken none prescribed drugs As doubt have time to fit into Schedule). It was my original Asthma control nurse from 1999. Who having seen me waiting to see another similar nurse, January 6th.  decided see me! Diagnosed my condition and chest totally out of control further she informed G.P. Arterial aneurism prevents any Breathing Tests, to help Diagnose along with C.T. Scans  Despite Respiratory G.P. wanted stop back-up Ventolin Inhaler As am on Steroid inhalers both since in my 20s. and should not be required if Asthma Properly Controlled? Also further both Steroid tablets and Antibiotics failure also further double strength of both also failed and continuously got worse. Having seen Urgently a Respiratory Consultant who explained not always Asthma causing cough and chest problems making very poorly. Now on 3. different types of Steroids Inhalers Plus keeping back-up Ventolin. Adding to extensive list of Drugs, for Numerous Conditions. Latest treatment has helped additional Asthma, worsening cough, chest conditions whatever?

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Terencjtt


Where do you find information about your illness? https://www.carenity.co.uk/forum/other-discussions/good-to-know/where-do-you-find-information-about-your-illness-2791 2019-05-29 11:23:10

avatar Hughmac

Hughmac

08/07/2019 at 23:19

avatar Hughmac

Hughmac

Last activity on 30/01/2021 at 12:38

Joined in 2019


2 comments posted | 2 in the Good to know group


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M


Where do you find information about your illness? https://www.carenity.co.uk/forum/other-discussions/good-to-know/where-do-you-find-information-about-your-illness-2791 2019-07-08 23:19:52

avatar Hughmac

Hughmac

08/07/2019 at 23:22

avatar Hughmac

Hughmac

Last activity on 30/01/2021 at 12:38

Joined in 2019


2 comments posted | 2 in the Good to know group


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Hi 

Got diagnosed with Crohn’s disease 3 years ago . Got told to google it . GPS are not knowledgeable in this , well the ones I go to . 

Hugh

 

 

 

 


Where do you find information about your illness? https://www.carenity.co.uk/forum/other-discussions/good-to-know/where-do-you-find-information-about-your-illness-2791 2019-07-08 23:22:57
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