Hi everyone, although I have had I believe a successful ablation October 2016 as part of a trial lead by Dr Sabine Ernst at the Royal Brompton Hospital London it has not deterred my interest in this rogue condition. I look for new research all the time as I believe there is something that goes much deeper as to the reason why some of us end up with AF and others do not regardless of lifestyle.
Recently I looked at the British Heart Foundation research website and found I think something very interesting. Professor Paulus Kirchhof has been given over one million pounds to research a gene called the PITx2 .
I have pasted onto this post what I read in the BHF research website and have also looked further into other papers which are very technical which I have found on the internet regarding this gene it may be the reason why we have this condition as i have always felt that it could be gene related. It makes for very interesting reading.
This is the post by Professor Paulus Kirchhof.
The BHF has recently awarded Professor Kirchhof a Senior Clinical Research Fellowship worth £1,210,736 to bring his AF research and clinical work together and establish a world-leading research programme in Birmingham.
The research is focused on unravelling how a faulty gene may lead to AF. “We know that alterations to DNA near a gene called PITX2, which is required for development of many structures in the embryo, are linked with early development of AF and we’ve found that usually the left atrium has high levels of PITX2,” says Professor Kirchhof, who will now study why this is important, and whether alterations in the PITX2 gene can lead to AF.
Professor Kirchhof hopes that when we learn more about the different causes of AF, we may discover alternative treatments. “We have learned a lot in the last 20 years and we have tools in hand such as medication and catheter ablation to treat these electrical changes, but we need to go one step beforehand to understand why someone with a certain genetic predisposition develops AF. So we still have a lot of missing links and this is where research like this comes in.”
The impact of the research could be far reaching. Professor Kirchhof says: “I think and hope that we may be able to develop completely new ways to treat patients with this genetic predisposition once we have our insights. I’m very grateful to anyone who has donated to the BHF for their support in this important piece of research
Thank you for this very interesting piece. I feel gene therapy will prove to be the answer, not that I have any medical knowledge whatsoever, it just makes sense.
Pleased to hear your ablation has been successful. Do you think the success is down to dr Ernst ablating the sympathetic nerves at the same time as pvi,
Hello meadfoot, I do think that the ablation has worked as I have a much better quality of life and no AF. I have to have another nuclear x-ray on April 4th to make sure that all the ganglions that were repositioned and those that were removed by Dr Ernst have been successful. The x-ray will also highlight if there are any other ongoing issues. I am medication free except for anticoagulation Apixaban which is my choice to stay on . I would say so far so good. I think that the Ganglion plexus Ablation by Dr Ernst is the best out there at the moment and I will be forever grateful to Dr Ernst for taking me on her trial as I know if anything is not right she will take me back to deal with it straight away.
As for the Pitx2 gene it sounds so feasible and so exciting, it seems so far that the Pitx2 gene is the cause and if so maybe it can be tweaked into behaving correctly how fantastic would that be . It just might be the complete cure that everyone has been waiting for which might also lead to screening for it at birth.
It is exciting to think that AF is now being taken very, very seriously with more research on the agenda. I look forward to following this research.
I am so pleased you have had such a fabulous result you must be full of joy. Dr Ernst sounds excellent and well done for finding her.
Fingers crossed her work and the research being conducted re Pitx2 gene gives us all something to hold on to. I would be interested to hear how your follow up on April 4th goes. Best wishes and well done. X
I second that and keep everything crossed that soon we can all see the light at the end of a very long tunnel and the end of a lot of suffering.
As I once was one of you and in a way still am and will always be, the suffering and fear that AF can afflict on one is palpable and never leaves you. Although I am AF free and live my life to the full or at least am trying to make up for what AF took away from me for many years there is still at the back of my mind that out of the blue it could return that is why I will always be a part of this forum and although do not post much read every post every day to continue to learn that is why when i am in a quiet place i research and look to see if there are any new trials or leads for AF sufferers. At one time AF was my biggest enemy now i would like to think that the tables are about to turn.
Hello Finvola. I think this research is going in the right direction. I always thought that there had to be a reason why some develop AF and others do not. It seemed to me to always be a gene problem and now with this new research i feel that it could take us into the beginning of finding not only the reason for AF but how it can be kept at bay and even better curing it. It is exciting and as they say one thing leads to another regarding research although from the papers that i have read online the Pitx2 gene has been known about for some time.
It also brings to light why some people with AF have so many ablations without reprieve from it maybe the Pitx2 gene is more fragmented in some people than others. I cannot wait for this trial to start and more than anything the outcome.
'reduced Pitx2 promotes an arrhythmogenic substrate'
I found this comment in one of the papers (at least I can understand this bit!!) and it looks like this could be exciting stuff for the future, both for prevention of AF developing in the first place and stem cell treatment for those already suffering with the condition.
Best wishes to you and I hope your ablation continues to be such a success. xx
I have had this condition for 40 years worsening as i,ve got older, my son who is 47 years old also has it, i do not know my father or his side of the family but i definitely think this is inherited.
in reply to
Hello delithnmck1 I think that you are so right but, also from the research papers that I found on the internet they explain also how this gene Pitx2 could be damaged in the fetus stage of life so who knows but, one thing is for sure I for one do believe that AF is caused by a faulty gene which now seems to have a name Pitx2 and if this is the case it will give a lot of AF sufferers great relieve to know that at last something constructive is being done into how and why this rogue condition comes about.
You know all of us at some time must have wondered where this rogue condition come from and, all of us at one time were going about our normal day to day business and then all of a sudden wham bang heart goes into overdrive for the first time that makes us think that we are about to take our last breath. That's the beginning of the AF journey and, then as it progresses it takes hold of us completely and no matter how stoic we are in saying it is not going to control us that is until one is in the grasp of a full blown AF attack which leaves us exhausted and frightened to the point many of us have questioned should we stay in today of go out, should we go on holiday, what if we have an attack, what should i eat what should i drink. This thing just controls us, it did me in many respects when i had it. I have always felt that this thing was caused by a rogue gene which now has a name Pitx2. I look forward to this research and its outcome and if the findings are right then we might have a cure or near as, so god bless professor Paulus Kirchhof and his research team may the force be with them as they say.
Thank you, for a very interesting post and for keeping in touch with us. Good to hear that your ablation has been a success. Thankfully new research and treatments are being used to find the answer to this rotten condition the sooner the better. I too believe its genetic my grandmother and mother both had it. I just hope I don't pass it on to my own children.
Hello souljacs4
My mother also would complain from time to time of a very fast heart beat at night when she tried to sleep and I know that she often felt as she put it rung out so. now I think that my mother had AF . She passed away aged 79 with a brain aneurysm some time ago.
I have often thought that she had an AF induced brain bleed and, so this is where the Pitx2 gene comes into play within family genetics but, at last there is going to be research into a gene that sat silently within us and probably caused the activation of this rogue monster that no one deserves. There is no doubt that there is much to learn about this Pitx2 gene and I for one cannot wait for the results,
Take care
Barbara
Hello flipflop..... good to hear your doing well👍🏻👍🏻
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Hello juggsy, sorry for late post watching the Bellows and Haye fight with my husband, WOW that got the Adrenalin going but no AF wonderful.
I have an appointment at RBH for another nuclear x-ray on the 4th April I believe that you have the same appointment soon as is part of the trial.
How have you been. I hope good and all is well with you. The research that i found regarding the PITX2 gene makes it a possibility that the cause of AF is a rogue gene as i often thought that it might be if so and the research bears it out then there might be a complete cure around the corner. Wouldn't that be something.
Take care
Barbara
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I'm very well, I'm up in may for my scans, then oct for my treadmill test, heart rate slowly coming down
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Hi juggsy that's great news but then you couldn't be anything but well after the fantastic treatment by Dr Sabine Ernst she is my hero.
My treadmill test is April 20th not looking forward to that one but will do my very best.
Barbara
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Yes me neither, haven't exercised for a while last time I did it got to level 5
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Hello Scott
Hope that you continue to do well,
I went for my endurance test, echo and Holter on Thursday, all went well in fact i was so surprised at the energy that i displayed in the endurance test that the team had to advise me to stop as i felt that i could have gone on and on. I did 10 minuets of non stop cycling and did not even break out in a sweat or become breathless . everything was good. I was really worried that i might not hack it because of my age and an ongoing back problem which is a trapped nerve but, the strangest thing happened cycling for those ten minuets quiet vigorously seems to have released the trapped nerve with almost immediate effect and i am now pain free from the sciatica that i had been experiencing in the last few weeks so a double whammy. I could not be happier.
Good luck with yours Scott as i know it will be a breeze for you as you are much younger and fitter than me, the only down side is that gross mask that you have to wear whilst exercising that measures your breathing strapped around your face and head it brought to mind Darth Vader from star wars.
Keep smiling
Barbara
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Great news Barbara..... I'm not scheduled for my stress test until oct, in maybim back up for my scans and echo
Thank you for your interest and posting some good news. You seem to be winning but quite understand your feelings that it may suddenly come back. Of course anything is possible, but it is more possible that you will stay well and the best advice I had from someone here was....talk tough to yourself, that's enough now let's move on.
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Hello orchardworker Thank you for your post. My ablation was I believe very successful and yes i have moved on very much so but, it is well known that AF can never be cured or so i believe at the moment. AF symptoms can be reduced by ablation and for many stopped in its tracks as i believe mine has been but, I will reiterate once again ablation is not a complete cure. Ablation can if successful put you back to where you were before it all began. but, how many people have had a successful ablation and been symptom free for years only for it to suddenly appear again.
The research piece that I found on the British Heart Foundation website regarding the PITX2 gene that will be researched by professor Paulus Kirchhof may tell whether this gene is the prime provocateur of AF and, if so the PITX2 gene can not be ablated. I like to keep all my options open and I like to keep in the loop where AF is concerned and not only that the research of this condition interest and fascinates me.
I am over joyed at being symptom free from AF but still and always will remain so very interested in how it came about and also i do like to be one step ahead where my health is concerned.
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