Psychological Non Epileptic Seizures
Northeast Regional Epilepsy Group

The stigma of psychogenic non epileptic seizures (PNES) is still with us

The topic for this month’s post came to me after finding a thread of comments made by emergency medical professionals (EMPs) about psychogenic non epileptic seizures (http://www.emtlife.com/showthread.php?p=299085).  It was saddening to read how EMPs talked about how they are often berated by hospital staff for bringing in patients with non epileptic seizures. I hope reading this moves you to want to do something about it.

Psychogenic non epileptic seizures are a psychological condition.  Early trauma sets in motion a lot of secondary problems.  Self preservation activates defense mechanisms.  Maybe not the best ones, but when you are being traumatized, they may be the only ones you have.  Depression, anxiety disorders, post traumatic stress often co-exist with the psychogenic seizures.  

There is nothing laughable about the condition.  There is no shame in it.  And most importantly, the person who carries it suffers deeply.  After years of working with patients who have PNES, I have no doubt that there is nothing that most patients want than to get better.  So why is it that so many health professionals continue to look down on the patient?  Why are patients so often described as “fakers,” abusers of medical resources, and manipulators? Is it any wonder that patients try to hide the fact that their condition is psychological and not physical?    

I think a lot of what is fueling this is ignorance.  

How can we make it better?  If we stay quiet and allow it to go on, we allow retraumatization to go on.  I propose we do something to stop this. We need to become active in changing it. 

All those who come in contact with non-epileptic seizures  need to be educated.  After reading the thread above, I started working with an EMT professional to put together an educational program that we hope to take to around the state.  How about you?  What can you do to help produce change?

41 Responses to “The stigma of psychogenic non epileptic seizures (PNES) is still with us”

  1. Amber Cooper says:

    We wrote directly to the EMT/Ambulance service provider after several discouraging interactions, and have been asked to come in and educate the staff. This is a HUGE step after YEARS of dealing with poor behavior due to misunderstanding and misinformation.

    • LH says:

      I was just was searching the web tonight considering applying for disability because my condition has gotten worse and I lost my third job because of it and now I am losing the privilege of living alone in all my 39 years of life, Funny thing about my condition is that I have had it since I was 16 years old and it has for the most part been manageable, and I have always thought I had epilepsy because the seizures were at first few and far between and the medication I was put on seemed to make them occur on a more regular basis so I stopped taking the medicine. When they started years later more frequently I would get taken by ambulance and I went through several different medicines that I didn’t like for one side effect or another. The seizures would lessen I would stop taking my medicine, I am stubborn lol, I also led a life of self medicating for some time years ago through all this I am a very honest person so I should tell all this. The seizures are embarrassing because I make faces and have accidents so I avoid being around people at all costs and self medicating seemed to lessen then so this was a great option for me and I am a loner by nature so it worked out great because I could my family and they never knew. Lets fast forward to now I am three years sober, seeing a doctor twice a month having what I now know to be diagnosed with after all these years, psychogenic seizures and I am bipolar and depressed and have stress and anxiety induced seizures. I take 5 different medications every morning and 6 at night faithfully and I just lost my job of one year that I absolutely loved because I saw one of my coworkers laughing at me when I was coming out of my seizure so I just didn’t show up for next shift that I was scheduled to work with her and didn’t call in so I was a no call no show, I was embarrassed. Its been tough for me to accept that nothing is wrong with me I just have a mental condition. I often wonder if I am making it up or if that is even possible, one doctor told me that so Im not sure. I have a lot of lumps on my head from crashing on the floor though I wish that would stop. Just two weeks ago I had a doctors appt. and my insurance has a huge deductible so I owe the hospital a lot of money, right before my appt. the accounting office called me and told me that I had to have a cash payment of 60 or I could not come. I currently pay a monthly payment to them faithfully every month on my bill but she said I now have to have a $60 copayment upfront for both my monthly doctor appt. plus make my monthly payment on my bill. I told her I didn’t have it so she told me my appt. was cancelled and do not come unless I had cash. So I am never going back there!!!!Guess I gotta go out of town and find a new doctor or stay in my room and die of depression

  2. Amber Cooper says:

    We wrote directly to the EMT/Ambulance service provider after several discouraging interactions, and have been asked to come in and educate the staff. This is a HUGE step after YEARS of dealing with poor behavior due to misunderstanding and misinformation.

  3. Tami says:

    I was recently denied disability because the judge says that I don’t have ‘real’ seizures. Makes me feel so horrible.

  4. Deborah Erl says:

    Having watched a family member suffer greatly with the PNES disorder, one does not question that it is real. I KNOW it is real. It is traumatic to observe and even more saddening to life with and manage. Those EMP’s would not question or laugh at this condition if they had a family member suffering from this or any other psychological disorder. People misunderstand how complex the brain is and how some of life’s experiences can dictate the future through a physical manifestation. I personally would love to talk to people to further increase their understanding as no one in my extended family knew anything like this existed. My relative feels ashamed, embarrassed and anxious because she wants to control her seizures and yet she cannot. She is learning to manage them, but it is not entirely possible. We should know more shame or embarrass these people any more than we would someone with an obvious handicap or physical disability. How can the human heart be so cruel to taunt those who are suffering? Particularly when they have chosen a career path to help those in need of it. Perhaps they should go to med school to further their understanding in the field of neurology before they are shamed themselves for maligning the truly ill.

  5. Deborah Erl says:

    Having watched a family member suffer greatly with the PNES disorder, one does not question that it is real. I KNOW it is real. It is traumatic to observe and even more saddening to live with and manage. Those EMP’s would not question or laugh at this condition if they had a family member suffering from this or any other psychological disorder. People misunderstand how complex the brain is and how some of life’s experiences can dictate the future through a physical manifestation. I personally would love to talk to people to further increase their understanding as no one in my extended family knew anything like this existed. My relative feels ashamed, embarrassed and anxious because she wants to control her seizures and yet she cannot. She is learning to manage them, but it is not entirely possible. We should no more shame or embarrass these people any more than we would someone with an obvious handicap or physical disability. How can the human heart be so cruel to taunt those who are suffering? Particularly when they have chosen a career path to help those in need of it. Perhaps they should go to med school to further their understanding in the field of neurology before they are shamed themselves for maligning the truly ill.

  6. Lily says:

    I have written to the hospital about my treatment after a number of A&E visits – they have not responded so I am now drafting a letter to the minister and so hopefully a ministerial enquiry will take place, however lets not hold our breath or cling to hope – that all left a long time ago !!!

  7. I dont know what is the worst. My Epilepsy or PNES. Having both, most of the time it is the PNES that is worst.
    I´ve made a website with my bf to eluminate the public about PNES. I write a diary, articles & find links and info for others with PNES; cause even those with PNES are afraid to seek the knowledge about it, as you say: we are trying to hide it.

  8. mark slama says:

    I am a 54 year old male I live in Oregon, I to suffer deal with pnes,I have been called a mental case, a fake, having doctors say we know something is wrong but we dont know what it is so go see a physcologist for help. It is frustrating demoralizing.My short term memory is affected by it,I am depressed I have panic attacks to the point I can not go places where there are crowds and would say the doctors dont know or dont care, I have lost my disability payments cause the carrier doesnt believe it and the doctors reports dont effectivly point out the problem, I am lost, and dont know where to go anymore.

    • Lorna Myers says:

      I have been trying to find someone to refer you to in Oregon but I think I am running into the same roadblocks you have encountered. Another option is to find a mental health professional who will take you on as a patient and then you can provide that person with reading materials on PNES. I know, not the greatest solution, but something to consider.

    • Heather says:

      Mark,

      I am a 27 yr old female now in indiana but moved from seattle. My entire life has been affected and I also have no idea where to go or what to do. I’m so lost I feel like it’ll never change…. I no longer leave my house, and not even my room or outside unless my bf is with me. I’m literally afraid of my shadow so to try and avoid all that entails, I hide under my blankets and go even more crazy. The only person I can even talk to is my bf but even then not all the time. The pain just seems so intense I can no longer cope at all. My bf is also doubting my condition since I haven’t been diagnosed with pnes. Just feel very alone…..but reading your post gave me at least the motivation to post to this and that’s saying a lot bc I have never posted in my life, lol. I wish you the best of luck.

      • Norma Smith says:

        I am a 41 female from Indiana, I currently been going through PNES. I took a fall back in March 2016 about 3 months ago I started having theses episodes. From my fall my injuries include my neck, shoulder, and knee, all on my right side. I have been in pain since the fall. I had surgery on my shoulder, but it’s still not fix. I get severe Headaches that last for days. I am not really for sure how to handle the PNES. My family does the best we can, doctors are not for sure what’s going on. My life has been turn up side down. I am afraid to do anything. I stay in bed most of the time. I have a 4 year old that helps take care of my when daddy is at work. When I have them she is right there holding my hand, telling me it will be ok. We don’t know what else to do. I was going through physical therapy and that all stop because I was having them there. So my shoulder and knee is not getting the right treatment now. I can’t walk right without a brace on my knee. My eyes are being affected as well from the headaches that I have. My vision is not the best as it once was before the fall. I would love to start a support group where we can communicate with each other and learn as we go. God bless you all.

  9. Lorna says:

    I recently got a request for my psychological non epileptic seizures website address. You can find it on the homepage on the right side. http://www.nonepilepticseizures.com When you go to the website, if you look under resources, you will also find some excellent websites from England listed as well.

    • Andrea says:

      I am so excited to check out more through this site! It is wonderful to hear from someone who had worked with people with this condition. I am ordering the book listed on this site and look forward to reading it. Thank you!

  10. Julie Hope says:

    Our daughter was shifted from hospital to hospital, Doctor to doctor. Some panic and can’t figure why the multitude of seizures. Kept telling ‘all in her head’, ‘a fake’ etc. Finally not one but two put her in a Dr. induced coma until could send her to another city for help. Same thing. Finally got to see an Epileptologist!! He said in his practice he has seen patients die from those DIComas. Do not let them do that to you. Get to an Epileptologist for help needed. They also will tell you that just as serious and important as the real ones and need immediate attention. She did get the help, but died in her sleep in local hospital 2yrs ago.
    Julie

  11. mike says:

    I was diagnosed with PNES in july of 2010 in the midst of what turned out to be 150 days in a row of non-convulsive, non-epileptic seizures. They began suddenly following two “thunderclap” headaches on March 9th, 2010. I had every scan possible including a five day video eeg stay at a hospital. Since August 20, 2010, I’ve had twelve seizures of the same kind–including a mild event today. They last anywhere from 2-10 hours and sometimes I have multiple in one day.
    I am also experiencing an increase in “manic-depressive” episodes, anxiety/paranoia, and a heightened sense of alienation. I wonder if they are related and perhaps one has exacerbated the other–looking back, I believe I may have been experiencing manic/depressive episodes for many years and just not known that’s what was happening–since the seizures everything is more intense.
    Does anyone have a similar experience?

  12. D. Maw says:

    “Absence of evidence is not evidence of absence.” -Anon

    Because they cannot detect it in their machine, does not mean the origin is psychological. Stress may be incidental, not causal. The fact that I had little sleep and ate potato salad may have little to do with it; however, my reaction to the buzzy fluorescent lights in some department stores and some technological devices definitely feels causal. Could these non-epileptic events inadvertently be “filtered” with EEG filtering software because they coincide with external noise? Nah, it likely stems from childhood trauma or mental illness. But wait- couldn’t this new category of “non-epileptic events” mask the true numbers of “increasing incidence” and “treatment resistance?” Nah, we are making great strides in curing epilepsy.

  13. maria calderon says:

    My mom was just told she have pnes, when we ask the Dr. laught and said well we can’t describe what her complaints are a this time but they might be phychological or from her pain so I ask them why while my mom is driving she is completly wide awake and her eyes closes and she can’t open them. The Dr. Looked at me and told me she’s never heard of something like that. So what kind of neurologist with no answer is this? Can someone help us on this condition I’m only 13 and I need my mom.

  14. Jeremy Godwin says:

    I am an ER nurse and started having these “dizzy spells” that would make me fall to the ground. I could hear and see things, but couldn’t respond. They progressed to periodic episodes of expressive aphasia. I had “the big one” on father’s day this year. Now I have what seems to b permanent right sided weakness and speech disfluency. I had the video EEG and was diagnosed with PNES. Started seeing a psychologists a month ago, and so far, she can’t see anything that would cause these. I continue to have them, the last two being last Friday. I have lost my job because I used up all my leave time. The episodes go from blank staring and shutting down, to shaking episodes. I can’t drive for fear of having one and hurting someone and/or myself.

    • Comfort Agyemfra says:

      OMG Godwin, u just describes me. I’m 33 yr old single mother of 7 yr old boy. I also work in the hospital back in July of last yr a confused patient kicked on my head and neck on the right side, past out. When the seizure set in I can’t talk, my right hand shakes have no control over my whole body, migraines OMG migraines, so many test: 4 MRIs, 5 CTs, 1 lumber puncture (painful) 2 X-ray, 4 different ERs visit, 3 different hospitals, EMG, 2 EEG (1 is 24 HR) mess up my hair, medication, medication and oh ambulance ride 3. Now I can’t go anywhere I’m always home. There are some Neurologist’s in Northern Virginia that are simply stupid and mean, they say I’m crazy it’s all in my mind and head so I should get it out don’t they think I will love to get its all out if I can, who want to go through that everyday. Oh by the way my work says they are not responsible for everything I’m going through I had a seizure at 9pm tonight with my son watching. My life as I no is over.

      • Comfort Agyemfra says:

        Oh I forget 3 days hospital stay

      • Tracy says:

        I have an 3 incidents of head injury, one where a 5 lb. brick fell from 20 feet and hit me on the head. I wondered if there was a correlation between head injury and PNES. I’ve done a little research and apparently there is a huge correlation between mTBI and PNES in a couple of studies done. I wonder why this is?

  15. Jeremy Godwin says:

    I hate not being able to help others. Now depression has set in. Don’t have panic attacks. I have been in therapy before and thought I had dealt with all my issues. If there is something else, I’m totally unaware of it. It’s extremely frustrating!!!!

    • Lorna says:

      Thank you for writing in. I’m sorry to hear this is going on. You may want to speak to your psychologist about getting a referral to a psychiatrist as well. THis is some research that came out a couple of years ago on sertraline and PNES. http://www.medscape.com/viewarticle/730502
      Cognitive behavioral therapy is also showing to be effective. I wish you the best.

  16. sheri says:

    These stories sound so much like mine. I was told I had PNES about two years ago. Well had all the test done even the neuropsychological evaluation and the Psy.D ABPP-Cn informed me to watch a UTube video about a transsexual getting beat up and they have a seizure to make the people stop beating them He informed me that was me and get over it. Told me that I could stop the seizures if I wanted to. I left his office never to return. But the seizures have gotten worse and my husband wants me to try someone else. This time I am going prepared with information. Am I wrong for doing that? I am afraid of Doctors or should I say health care workers. I live in a small town in Florida and am very limited on Doctors. I had a wonderful Doctor Bendadis from Tampa General tell me I had this and he has wrote several papers but does not do anything for care of PNES. Ok I have talked enough about my problem and thank you for reading this. I pray that someday these Doctors get educated on PNES. I have gotten my disability after going to court and having a seizure there. Praying for all

  17. Mrs L Jamieson says:

    I suffer from P.N.E.S and have done for about 8 years now. I can not live a normal life, go out alone, ( i have panic attacks). I have seizures on a daily basis which is very distressing for my family to see. I also have very bad panic attacks which on numerous occasions have stopped breathing, I have had all tests imaginable and the consultants says it is P.N.E.S. My life had changed dramatically, i can just cross the road where i live to our daughters but that is far as i can go alone. Even when out with someone i can have a seizure , in a shop, car park, the street, anywhere! I wish i could like a normal life but can’t

  18. Wow. I don’t feel so alone anymore. Where do I start? These “seizures” started following the removal of a VP shunt in 2008 I was told I was faking, that I needed to stop, that I wasn’t doing myself any favors…ect. I have had MRI’s CT’s MRI’s sleep deprived EEG’s my liscence has been medically suspended. I can’t shower alone. 2 Years ago or so I was told I had PNES and to go to counseling…Counseling? I fall on the floor convulsing and drooling all over myself, more recently I have been having muscle spasms…all over spasms. When this happens I don’t always fall I just “glitch” is what my husband says. How does this show a need for counseling? I get depressed because well I have seizures. I was fine until my shunt was removed, how is this not related? I woke up once in a hospital bed with my foot bleeding…I asked my dad why it was bleeding and he said a nurse and doctor (that he removed following the incident prior to me waking up) were yelling at me telling me to stop faking and procedded to poke my foot with a needle repeatedly telling me THEY had had enough. I have no recollection of this other than my foot bleedingand hurting. They had had enough? You would think that these doctors would come up with an answer…I juat want my lifeback

  19. wvsense says:

    To everyone here, thank you for sharing your story and experiences. I have advocated about seizures since I was 18 years old when I had my first generalized tonic clonic seizure. It’s been a long medical road of diagnosis hits and misses for me & as a child abuse survivor – it only adds to the mockery of medical care I have received in North Carolina – Virginia and West Virginia. I keep a Suicide Hotline Number on speed dial for me nowadays. Not because I am ever suicidal or have ever self-harmed but because I appreciate the free service of having someone qualified & courtesy to listen to me when I am emotionally or medically upset or frustrated due to my symptom complication. The free counselors listen compassionately and are profressional and medically intelligent more than I get from paying a doctor for no answers. Maybe it could help others to know that there is help is out there that works when calling a free hotline number. Google search “hotlines” and find one to suit you. That is what I do. My diagnosis has been hit and miss my whole complicated life. Epilepsy in 95. PTSD in 05. Septoplasty in 09. PNES in 2012. Bipolar in 2012. Trichiasis of the eyes 2012. Bone spurs and bone bunion deformities in my feet in 2013 that require surgery to remove them off both feet that I can not afford nor will I. At this point of my life after seeking decades of therapy – medical assistance, prescription medications that do nothing to ease my symptoms & only make them worse; I only seek treatment if it’s life or death or when I feel the urge to do talk therapy face to face with my therapist. I choose to be on no prescription medicaitons cause they only complicated the symptoms I already struggle with & I do not need anything that is only going to make it worse. It’s not easy when you know what your symptoms are and there is the things internally wrong with you but doctors mock you, laugh at you, rudely object to you, fail to engage in conversation and listen to you or they offer you treatments that you can not afford. That broke my heart more than anything because a psychologist did want me to undergo this MEG brain scan, while doing intensive PTSD therapy & an EEG in a scheduled session. But there was no way I could afford it and he had done these treatments with Veterans who had seizures and PTSD. According to him the brain can inflame deep within when PTSD is triggered that it can swell the brain that regular EEGs won’t pick up but with MEG brain scans it can. But I couldn’t even afford to go back to this doctor as our insurance would not pay the cost because he was an out of network doctor. They only gave a discounted visit pay but we had to pay over 90% of the bill and we couldn’t and still haven’t. It’s so hard to know the ins and outs of employer sponsored health insurance because depending on the care you need you have to go through an act of a literacy competency library with those people to have them explain to you why a medical doctor is so much cheaper than a specialist & why one specialist is only $40 but another is $300 depending on the co-pay or deductible. It’s ludicrus. It’s sad, exhausting and stressful & people wonder why more patients don’t seek treatment & from what I hear Medicare & Medicaid is even more limited & complex for treating patients depending on the services they need. So who knows? My husband was researching how sleep apnea can cause blackouts – seizure episodes and such of medical complications that are first suspected to be psychological in nature when actually it is sleep apnea causing the problem. But who knows? Unless you are financially wealthy to spend all your dollars chasing answers at the end of a rainbow that never ends….you won’t get anywhere anyways ~ but don’t give up. Even without having solid answers of why things happen mentally or medically to us – we can still try to constructively cope, learn about our conditions ourself and do the best we can daily to help our self and not hurt or medically compromise ourselves more than we already have been. My husband and daughter are my life savers and help me even though we all suffer financially because I can not safely work anymore due to the lack of routine & daily inconsistencies in my life that my symptoms cause & I am awaiting my pending disability case fighting for the benefits I earned from the years I did work and paid into. But because I am of the young age of 36 years old, even my lawyer says it is almost nil to none because of my age & getting approved. I have sufficient data from even my medical department from my previous employer of witnessing my seizure things & documented as generalized tonic clonic seizure. But to no avail, it didn’t matter & does not. “Cause one person will call it an ant of what they witness and another will call it a grasshopper. My lawyer also stated because of the years I did work – the extensive work I did and my proven past history of capability that she doubts I will win even though we are re-appealing. I just suck it up at this point & share when the notion hits me nowadays too. I live each day as my last making the most of it and read other’s stories of strength to keep my own up too:) Best wishes. May the mysteries of medicine be resolved one day…and patients have enough faith in them self to do what they have to ease their own complexities~

  20. Wendy says:

    I dont know where to start! I was diagnosed with Hydrocephalus 8 years ago, Pots 4 yeas ago, chrons 6 years age, SVT 4 years ago! I had a head trauma during a fall, 3 days later my first non- epileptic seizure they say! I had a Vp shunt placed 16 months ago! I have been to the ER over 100 times, tired to kill myself because of the pain! I just had a 3 day eeg and says nothing! I’m treated like a drug sicker, or just they say I’m stressed out! I have panic attacks! I want answerer ! I am 37, one child and a wonderful husband of 17 years who has been by my side ! But im dying inside!

  21. Kelli says:

    I just had a 3 day eeg back in june. I have had many error visits, 3 separate neurologists scoff at me and say it was again Lloyd in my head. Finally one of them referee me to Seattle for a specialist to check me out. The testing and video recording resulted inn the diagnosis of pnes. I panic and can’t leave home, can’t keep a job. I’m only 25 and my husband is a great help with everything he was the one who pushed for other opinions from medical staff. I no longer feel alone but still isolated.

  22. kimberly says:

    I am a 32 year old woman, and I have epilepsy and in the last year my stress has got worse do to tryin to take care of my mother who was ra even though my health is not good do to uncontrolled epileptic seizures, since the seizures have gotten worse the drs had me stay at the hospital for a week for a video eeg and just found out that I have both. I was dignosed with epilepsy 24 years ago and non of the previous eegs found the non epileptic seizures so im wondering if the new stress has brought on the non epileptic seizures since I was told that the eeg found both epilepsy and non epileptic seizures

  23. Ken Ritter says:

    I know this is an older post but I have something to add to it. I was recently in an ER because my seizures were longer and more violent last longer than three minutes. I called the ambulance and they took me to the ER. When the ER Dr. came in he began to ask me questions in a very hostile way. He finally said to me “Mr. Ritter what you have does not exist and I don’t treat something that doesn’t exist.” then he walked out of the room. I immediately started to advocate for myself by calling the head nurse to make a complaint against this Dr. I called the administrative offices and spoke to several people in the next few days. I was assertive, not rude, and said this cannot happen to me again. With our illness, you have to be your own advocate.

  24. Andrea says:

    My husband started having PNES just over a year ago. We are still looking for a doctor that has decent knowledge of treatments. We have started a facebook page also because we wanted to educate people of this condition and connect with others. It is amazing how many people out there are lost and how few doctors know about it. I feel like I have learned more from my own research than specialists that have been to years of schooling. It is crazy. We watch for “triggers” but have not been able to figure anything out. My husband has a variety of seizures that can go on for hours. He gets Todd’s Paralisis on his entire right side of his body, horrible migraines, etc. The only thing we can attribute it to is stress and maybe PTSD from 17 years as a fireman/paramedic. He never thought he had PTSD. I hope the world can learn that this condition is real and become understanding. It’s horible to have people wish they had something as awful as cancer because at least then people, jobs, and doctors are understanding. :(

  25. Kaitlyn says:

    I have been suffering from PNES for years and many times have been looked down upon or even denied medical care because people think I’m “faking.” These seizures may not be epileptic, but they are very real and it makes me feel hurt and embarrassed when people talk to me and about this disorder with such animosity and ignorance. I hope to see more acknowledgement and education about the disorder soon…it would fill me with hope to see someone actually understanding the situation.

  26. Andrea Jameson says:

    How can I read more about the educational program put together?! I would I’ve to use it when speaking to EMT’s here.

  27. Brandi says:

    I know this is an older post but all your comments make me feel better about this makes me feel not alone. I was diagnosed with this 4 months ago and am lost. I made a closed group on fb because I was tired of people that don’t know about this judging me. Its called PNES, NEAD, PTSD, Epilepsy Support. I was shocked at how the emt treated me while going to the hospital one morning I was scared silly and he told me if I don’t knock it off them he was going to intubate me! I had no idea what was going on I was freaking shaking I was so scared.

  28. D Mitchell says:

    Just got diagnosed yesterday with PNES…………. I don’t know quite what to say………..I’m just glad I found this blog and can see that I’m not alone,
    Sincerely
    Staring, dreaming and shaking in Pennsylvania

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