Where do you find information about your illness?

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JosephineO

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16/04/2019 at 14:31

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JosephineO

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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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lesmal

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02/08/2019 at 14:30

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lesmal

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My diagnosis with epilepsy took 3 years for completion... Regret memory loss with medication from epilepsy doesn't bring back the memory.

With recent diagnoses, i.e. osteoporosis, brain aneurysm etc. these were done through the hospital after testing and further discussions with nursing staff, doctors and neuroradiographers.

My GP keeps an excellent eye on me regarding blood tests, medication prescriptions and other less serious conditions.

I also do research on the internet and Google; if given a new medication I investigate further through websites and more!

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Les

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 2019-08-02 14:30:21

Tigger.co.uk

03/08/2019 at 11:00

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I was told I had a chest infection had antibiotics but I was breathless for a long time wasnt happy so I asked to see someone else saw a general practitioner he said he wasnt happy so he sent me for a chest ct scan found out it was breast cancer maybe if I had been for a ct scan in the first place they would have found it sooner ,but when I was a kid I was always ill with stomach cramps ,very skinny looked anorexic but when I was 49 found out I was a coeliac and had been since birth so all the illnesses I had as a child and the infections and anaemia, could have been prevented by being examined for coeliac disease all the foods I ate was poisoning the lining of my stomach it took a village doctor to send me for endoscopy and have a biopsy I dont think I would be alive today that is why I am fighting to help children get tested for this horrible disease as it comes with so many other illnesses straightaway I was put on a gluten and wheat free diet I now have osteoporosis arthritis, hypertension, low blood flow to my heart which is angina,deaf in both ears ,glaucoma, birder line diabetes, PTSD low moods, anxiety, migraines, and now I have breast cancer emphysema copd, lymphoedema, my breast cancer isn't due to being a coeliac neither is lymphoedema but I'm not sure about the rest all I know is that some of these illnesses could have maybe prevented if diagnosed earlier when I was a kid

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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 2019-08-03 11:00:42

Courtney_J

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11/06/2022 at 22:41

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Courtney_J

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Hi all,

I've come across this older discussion and I find it quite useful: where do you find information about your condition? Is it mostly online? Have you been part of any "offline" patient support groups? Does your GP/specialist doctor/hospital/clinic provide you with enough information about your disease and your treatments? Have you got any advice for others?

Feel free to share and discuss in the comments below!

@Mollymoo25@Sazwaz16 @vintagecat @Samantha Jane @gemmahaldane @JAfton @RosieBrooks @Honeybrown @pratapmehta @ElizabethBancroft @colinlivi @viking47 @Littlehel @Tanyabg @Jools1712 @Carolj66 @Dutch2 @Rita14 @kenwilkin @sverster @Susan67 @rakeshkmathur @gertyb @Johnboy @sennett @Joanna @tommygr @Marymorris @harp57 @Lynneappleton @nazza91 @Bethsherry @Ginny1234 @Diamonds @SaintRochs @JTMckenna123 @Talamatty @madzik993 @CaryHutton @BakuBunny @Catblonde @Peter1982 @jennyb28 @Richey @sahrish @Turanci @Stevewestbury @Zaphod001 @Mags111 @Shieldsy @Feeforman @JoanieH @walnuttree @Rosetta @Zannie53 @TrudyL @Margaret69 @Debweb @ArthurA @@raygreen @SPNEWBY

Thank you all in advance and have a lovely weekend!

Courtney

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Courtney_J, Community Manager, Carenity UK

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 2022-06-11 22:41:14

lesmal

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12/06/2022 at 15:29

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lesmal

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I do lots of searching on Google regarding new medications given, side effects and more. I then go onto health sites to find relevant information.

My doctor is very good also, and explains treatments to me.

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Les

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 2022-06-12 15:29:57

Mrspotter

22/06/2022 at 02:07

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I look for information online. My doctor does not talk much, unfortunately, and I am not the one to ask too many questions.

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 2022-06-22 02:07:25

Where do you find information about your illness?

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