How do you cope with your health condition or disease?

How do you cope with your health condition or disease?

Today we have launched a new campaign to share what it's like to live with a health condition or manage your own wellbeing.

Over the coming weeks we will be sharing short videos from out users unlocking their health condition.

Our first user is John. He has unknowingly had atrial fibrillation (AF) for years, before being diagnosed and beginning treatment in 2014. He later went on to have a stroke in 2016.

Do you have a story to tell?

We want to you to share your story in a short video. Whether your video explains what living with an illness or disease is really like, how you overcame adversity, a story about how you learnt to live with a diagnosis or condition, or even how connecting with other people with your condition in HealthUnlocked has helped you, we want to hear from you!

You can send your videos to communications@healthunlocked.com or share on Twitter @healthunlocked or on our Facebook page.

More information on this can be found on our latest blog blog.healthunlocked.com/pos...

We look forward to hearing your stories.

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49 Replies

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  • Do you want us to put this on our communities? x

  • Yes please. It would be great to share these fantastic health stories awith as many people as possible. Thanks LouiseRoberts

  • I got the email from Maddie just after I posted this. LOL

  • Hi, I stopped taking Prednisone. Crazy side effects. Memory loss, my vocal cords effected. Always tired. Even with prednisone. Blood count up, blood count down. Sugar that was down due to my Keto diet, now up to 395 from 128!! Blood pressure from 133 now 197, all since prednisone. Then an RN had a blog reading; I cured myself from ITP...After 12 years of ITP she found gluten free food reversed ITP . I started today Saturday Nov 4,2017.

  • Would like to see what others are experiencing

  • Not keen on this request. It's far too limiting i.e olnly those who can make videos etc. There is no information how to have them posted. Many non video makers will have interesting stories to tell.

  • The video was shot by HealthUnlocked. Nice Biscuits videoed me over two days but it is currently restricted to clinicians in the UK and USA. I hope that Trudie Loban can persuade ingelheim Boehringer to release it for public viewing.

  • I agree with the view that this is too limiting - only those able to or willing to use a video blog can take part. Everyone has a story to tell so widening the opportunity should be a no-brainer, Anyone who does want to have a go should write themselves a short (really! max 200 words) script BUT try NOT to read it to camera. Memorise the key points at least and then just start. And remember - if you use a web cam you need to look at that NOT the screen.

  • Not much use for those of us in our late eighties. A bit late to join all this modern technology.

  • Never too late. Some libraries can help you get started

  • It is a good idea. Those who want to express themselves this way shouldn't be limited. We all have different ways we communicate ourselfs. It's not something personally for me , but for others it could be useful.

  • I think this is a wonderful Idea and look forward to hearing more stories. I have found following this blog a great comfort.

  • To be honest I found it did not inform, how would it have changed his life, did he have a stroke before taking anticoagulant or after?

  • I was advised by an EP not to take an anticoagulant and my CHADVASC was 1 because I was 68 and I was a full-on "gym bunny". My cardio exercise heart rate disguised the AF. If I had known that I would subsequently have a stroke that would wipe out a lot of my memory, leave me partially sighted without a driving licence and put pressure on my wife, I would have ignored the EP and taken an anticoagulant. Unlike the video that I did with Nice Biscuits that took two days, this was a two hour interview where post-stroke brain fade set in. I'm happy to answer any queries you have.

  • Agree, lots of unanswered questions

  • I too have been invited via email to submit a video but I am reluctant for the following reasons. I know that the 'what I know now'' part of the video would never be accepted by Healthunlocked. For example the fact that I dropped all med's after 6 months simply because the data shows that meds such as statins are at worse ineffective and at best inferior to natural alternative means as shown via clinical trials. I am also wary of the video being edited to represent only the mainstreams point of view. Finally my video would probably be about 3 or 4 minutes long not the edited 20 seconds we just watched.

  • Please link to at least two clinical trials that show statins being inferior to natural alternatives

  • Nearly twenty years ago two landmark randomized clinical trials appeared in The Lancet which forever changed the course of medicine for patients with coronary heart disease (CHD). The 4S study employed a cholesterol-lowering statin drug and reported a 30% mortality reduction[1]. The Lyon Diet Heart Study utilized the Mediterranean diet and reported a 70% mortality reduction[2]. Subsequent studies of the Mediterranean diet have confirmed these findings and also shown a reduced risk of cancer, diabetes, and Alzheimer’s disease[3-6]. Subsequent statin studies have led the United States Food and Drug Administration to issue warnings regarding the increased risk of diabetes and decreased cognition with statin drugs. Paradoxically, statins have gone on to become a multi-billion dollar industry and the foundation of many cardiovascular disease prevention guidelines while the Mediterranean diet has often been ignored.

    Please check the Lyon heart study and its follow up along with Oslo heart study.

  • I am very familiar with both of those. In the Lyon heart study 60% were on cholesterol lowering medication. Also the low saturated fat proved to be superior.Plus 'mediterranean diet' means different things to different people = arguably it is not just food but sunshine, exercise, low stress etc

  • The Oslo study supported the use of statins! More people died in the placebo group.

    thelancet.com/pb/assets/raw...

  • Thats the Scandinavian Simvastatin study which recruited people with heart disease and cholesterol above 5.5. Those taking the statin faired better which does not surprise me but then that is not the point of my post. If you cannot be bothered to make lifestyle and diet changes then take a statin and gamble with the side effects and the fact no one lives longer on statins. On the other hand change your diet and lifestyle and get better end points.

  • I don’t disagree. I merely asked for evidence that a natural alternative had better results than statins and was instead given two studies that either did the opposite (Oslo) or were nothing to do with statins(Lyon)

  • The benefits gained from the non control group on the Lyon study had better outcomes than had ever been produced on a statin trial. Back this up with evidence from pop's that do not get heart disease and you get a very strong suggestion that the appropriate diet will do at least as well as Statins if not better without giving you an increased chance of Diabetes and Dementia as with Statins. Sadly people are not told this by their GP's. They are told that cholesterol causes heart disease and that by getting it down with a statin all will be well. The drug industry is however now realising that they are losing the battle for Statin customers and are preparing the ground for the next phase which will be to lower the levels that define Hypocholestolemia and thus bring in a new audience especially if they can get them diagnosed as early as 10 years old or less

  • A 'very strong suggestion' is not evidence, is not a clinical study. In the Lyon study - which was deeply flawed anyway, BOTH groups had people in them taking cholesterol lowering medication! 60% took beta blockers and/or ASA. I comment/criticise unsupported statements made by those who push statins - but also those who are against. I posted: "Please link to at least two clinical trials that show statins being inferior to natural alternatives" and as yet you have not done so. This does not mean your statement about natural alternatives being better is untrue but you have failed to provide evidence of any clinical studies to support it.

  • We all know why there will never be any clinical studies of natural means V Statins, people dont need me to spell that out. If people prefer to trust drug company sponsored clinical trials about Statins in which participants are filtered out before hand should they show signs of ill response not to mention the non publication of data regarding these trials, then they can go ahead. If you do not want to get heart disease just look to the populations where it is pretty much unheard of. Has there been a clinical trial of Statins V Diet no, is there evidence that diet is more effective than statins YES. How strong is that evidence, very strong IMO. Are people given a choice by their GPs, are they advised to make changes a,b and c and come back in 3 months and if there is no improvement then I will suggest a Statin ?, No they are put straight on Statins.

  • You say "We all know there will never be any clinical studies on natural means V statins, people don't need me to spell that out"

    Well, you could at least have referred to ijphjournal.it/article/view... rather than suggesting the Oslo study which goes against what you say and the Lyon Heart study which is irrelevant

    Sure so why write "For example the fact that I dropped all med's after 6 months simply because the data shows that meds such as statins are at worse ineffective and at best inferior to natural alternative means as shown via clinical trials."

    When we are dealing with people's lives, especially in public forums, whatever our views we should try and substantiate any points made.

  • Dean Ornish published his trial results and showed a reversal of heart disease using dietary and other complimentary means. I am not aware that Statins have ever reversed heart disease. At the end of the day we all have to make a choice, for me its the balance of evidence from population studies, trials such as Ornish and the trials that are performed on individual foods/supps and their effect on heart bio markers versus the rigged trials of big Pharma in which trial data is kept secret. I prefer the former

  • The length of the video depends on who is showing it. This brief video that doesn't explain the background was shot by HealthUnlocked in two hours. Last December I did a two day professional shoot about anticoagulation with the Nice Biscuits production company, who do videos for Aston Martin, Tiffany and other majors. The post-production video is 2 minutes 40 seconds and hopefully will soon be released from the sole circulation to clinicians in the UK and USA.

    It's inevitable that any video will be edited. Nice Biscuits wanted me to put my story but warned that their client might want it edited in a certain way. Credit to Nice Biscuits, the commissioning agency and their client that very little was changed. Some people might not agree with an infomercial for Big Pharma, but for me it was important to show that being cardio fit with the right diet and body metrics may not save you from a stroke if you are not taking an anticoagulant. I was probably too arrogant to believe that I could have a stroke: "that's for over-weight, unfit people who eat the wrong things - right?". So I'll hold my hands up, but if it makes just one person think twice and saves them from a stroke, then I'm grateful for the opportunity and, I don't regret it.

    I agree that the HealthUnlocked video doesn't explain the background. However, it was one of those days that stroke survivors get, where I went into brain fade. I think you can see that I look like I've had a rough night "on the tiles".

  • I don’t understand this video. He was diagnosed with AF which is a major stroke risk. He then had two years of treatment ..... and then a stroke! What went wrong?

  • I am the guy in the video. For most of my life I've been a bleed risk from haemangioma on my tongue (fortunately not in my brain). I was an extremely fit 68 year old with a long history of cardio exercise, so an EP who had earlier prescribed dronedarone that nearly killed me, recommended that I did not take an anticoagulant and scored my CHADVASC at 1. It took a year to of treatment and relapses to recover from the effect of the dronedarone and, the effect of the amiodarone on my liver still seems to be prevalent. My gym work was going well, then one day I was fetching something out of the shed and fell down. I didn't have any FAST synptoms but I went immediately and permanently blind on my right hand side. The ambulance paramedics talked to me for an hour before realising that my responses were getting slower; at that point theyn realised thatI had siffered a stroke. During the recent years I've had medical carthat has ranged from being discharged wuth a mass in my lung and no treatment, to literally life-saving brilliant treatment for pulmonary toxicity and later a full stroke.

    I haven't viewd the video yet, but it was a two hour slot and not the two day shoot that I did with Nice Biscuits.

  • That’s awful! Presumably you didn’t know pulmonary toxicity was a known side effect of amiodarone? So the real problem - originally - was the bleed risk and everything else stems from treatment if that?

  • I didn't know that the prescribed dronedarone had a 6 in 100,000 risk of major side effects; the EP who prescribed it never told me. At home I had a non-productive cough and crackles when breathing: the Internet pages suggested pulmonary toxicity, but the EP emailed saying it will clear in three weeks. On the first admission to hospital the consultant diagnosed community aquired pnuemonia and discharged me with a course of antibiotics. I was admitted to hospital a second time - in a geriatric / dementia ward - where the young doctors had never heard of dronedarone. An x-ray showed a mass in the right lung. They persisted with antibiotics to treat the pnuemonia: antibiotics have no effect on pulmonary toxicity. I was told; "We don't know what you've got and we're running out of drugs to treat it". It seems that I had a spell of AF - common if you're unwell - so although they didn't mention it, I was put on an amiodarone IV until my urine turned coffee coloured signalling that I cannot tolerate amiodarone. I was discharged with the mass still in the right lung and no follow up or medication. I happened to bump into my GP in the Health Centre who measured my blood oxygen at 76% and immedimmediately arranged for me to be admitted for a third time. This time they confirmed that it was pulmonary toxicity and by the evening I was close to critical and at 1:15 am they wanted to ring my wife, sedate me and put me on a respirator in Intensive Care: I said no. I made it through the night on high flow high pressure oxygen and hydrocorsitone. I was expected to have disabling damage to my lungs. I was discharged with over 500 tablets. One of the consultants wrote a paper om my case, so there is now wider awareness that dronedarone can cause pumonary toxicity / cryptogenic organising pnuemonia. That took a year to get over and during that time and with difficulty I saw the EP who had prescribed the dronedarone. He was the one who recommended that I did not take an anticoagulant because of the bleed risk. I subsequently had a full stroke despite a CHADVASC of 1 because I was 68.

    I now take an anticoagulant for the increased stroke risk and, I still have the bleed risk. If I had ignored the EP and taken an anticoagulant I may not have had a stroke. I can't take beta-blockers because my heart rate is in the 20s with pauses when I'm asleep. So I don't take rate control medication, I just try to keep it less than 180 bpm whilst on the rowing machine. Given that, the dronedarone was probably unnecessary too.

  • I forgot to add that on the third admission to hospital I had a mass in each lung.

  • It’s small comfort but if you had not been a very fit 68 year old it could have been even worse! So what does the future hold - recovery, containment or slow decline?

  • Even with one properly functioning lung I could take the electroronic spirometer outside its maximum, so you are right. When I was on 70% oxygen in hospital I would spend a lot of time yogic breathing: it's true when they say your yoga teacher is always with you. I'm very grateful that neuroplasticity kicked in and even though it's slow now:

    * I'm Secretary of a nature conservation group and we've been out today clearing scrub and we are regional finalists for a grant;

    * I can do the Telegraph moderate Suduko again but it takes me two days;

    * the DVLA Medical Group have just let me apply for a disability driving assessment;

    * I have a Concept2 rowing machine as that feels safer (if I have another stroke) than being in the gym;

    * my wife loves me despite all the medical ups and downs.

    I'm sure that my former yoga teacher would say that this is for me to learn in this life so I have greater knowledge in the lives to come. Namaste!

  • What a great answer! Everyone should read this and Health Unlocked should add this as a slide for the film! Hats off to you sir!

  • Thank you sir for your kind reply!

  • How do I cope with my disease or condition? I consume more nutrients AKA I eat more natural REAL food and try not to eat so many processed foods/refined sugar.

    The fact is, you get a lot more nutrition from natural REAL food than you do from processed FAKE food. Nutrients are stripped from processed foods, they contain a lot more sugar in them and I call them FAKE foods because these so called “foods” do not grow out of the ground. Man creates these foods.

    “Let food be thy medicine and medicine be thy food”

  • Surely it depends on what your. Condition is. But more and more it seems lifestyle changes should be the first - and possibly only - treatment

  • No, it doesn’t necessarily depend on the condition. Everyone should be getting there nutrients. Look more intoBig Pharma and how the pharmaceutical industry is just a big business.

    My mum is pretty fit and well for now. She did suffer with IBS but took charcoal tablets and has not had a problem for years.

    She has had bronchitis or even bad coughs before and she dinks mullein tea to get rid of it. In fact she works with a lady who had bronchitis or something similar and she was making constant visits to the doctor and each medication he prescribed her didn’t touch the problem.she spoke to my mum and my mum gave this lady some bags of mullein tea and after a week or two this lady was saying how brilliant the tea was.

    I have a brain injury and as with anyone with brain injury, fatigue is a big problem. I used to find it could be a problem, USED TO, not no more though. After I read about frankincense essential oil and how good it is for the brain, I went a got some and have never left it. It is brilliant stuff and I don’t get so fatigued now.

    Because of my injury, my walking balance is poor and the muscles in my legs workextra to maintain balance so I end up with pretty tired/sore muscles in my legs. I treat that with essential oils as well.

    If only cannabis was legal I would be using that a lot more.

    CBD oil is available but that is not as affective and plus it is, or can be, costly.

  • Yes so it depends on what the condition is as to what actions you take. Clearly someone with coeliac disease will eat differently to others

  • They can eat differently but they can still get the right nutrients from the right foods.

    As I say, processed foods will not help.

    Most of these disease and other health conditions going around today did not exist years ago because more and more processed foods are being ‘invented’.

    People should research more at what it actually is they are consuming. I believe the diet I had when I was a kid was the biggest reason for my neurological problems.

  • And air pollution

  • Air pollution would play a role but I would definitely go more with my doet.

    I believe more in conspiracy theories more than what the government/media tell us.

    If you look more into Monsanto and their history and what they are continuing to do, you will understand why Isay it is my diet that did it.

    Speaking of air pollution, there is also chemtrails to think which can contribute to health probs.

  • Interesting read, thank you!

  • I curl up in bed, close the curtains, read al kinds of books on the subject, watch drama movies on Netflix - because misery loves company- avoid human contact and if my partner comes in to give me a kiss and say "I love you, everything will be ok" I am filled with such anger towards him, avoid his kiss by turning the cheek, and I tell him to get out and leave me alone . I say more rude and derogatory words against him BUT not out loud , only inside my head, because he will never understand that everything will never be ok because I have lived with it for 60 years, destroyed careers, neglecting my child, wrecked two marriages, emptied the bank accounts in shopping therapy, feeling worthless and ignorant no matter my university degrees, PhD, and post doctorate research....I feel like I am lost without a man in my life who can protect and take care of me, almost like a mother, a father and my live-in caretaker...Need I say more?

  • What a splendid idea Alexa. Personal storie3s act as credible testimonials. And videos has the power to engage, inspire and motivate. I would send your message across all communities.

  • I definitely think this is a great idea. Videos help us bring people alive, however, I think it should include excerpts from people unable to make videos too.

  • Thank you to everyone for their comments and videos and to John-Boy for his inspirational story. There will be further stories on other conditions coming out over the next few weeks and we look forward to seeing some of your own video stories soon.

    These short videos will only show just part of a health story, and only represent just a small percentage of the health stories we see everyday on the platform.

    If you are unable to do your own video, we hope you will enjoy watching other peoples and continue to share your own health experiences on the communities you follow on HealthUnlocked.

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