46:08-51:26
I want to start with one thing that kept coming up in some of the questions that even were submitted the last couple days and this is about the worry about when is an emergency, in emergency. I mean let me tell you some of the specific questions. One person says they're constantly terrified and anxious that today's pain could be it; how do you stay calm and not run to the emergency room all the time? Another person says, you know, I'm 47 but my father was in his 70s when he had his aortic dissection like, you know, one of my chances, what are the chances like comparing to the parent. Somebody else's every, every time, every muscle pain they feel like, you know, is it physical and how do they handle the mental side of it and, and then another, another 16 year old that has a stable aorta root aortic root but they're still constantly worried about aortic dissection, so I don't know. Do you want to start with that one? Well, I see Glenn's nodding his head so do you want to start with that?
ではまず、ここ数日の間に寄せられた質問に答えていきたいと思います。緊急処置が必要となる場合についてです。「今日感じている痛みが急を要するものかどうかが心配で、恐怖と不安が絶えません。どうすれば落ち着いていられるのでしょうか。毎回緊急処置室に駆け込みたくないのですが、どうしたらいいですか」「47歳です。父親が70代で大動脈解離を発症しましたが、私の場合の発症リスクはどの位でしょうか」「筋肉の痛みが出る度に肉体的な痛みなのか不安になります。精神的な苦痛にはどのように対処したらいいですか」「16歳です。大動脈基部は安定していますが、いつも大動脈解離に怯えています」といった具体的な質問が届いています。最初に回答していただける方はどなたですか？Glen先生がうなずいていらっしゃいますので、最初の回答をお願いします。
Yeah, I'm happy to take a stab at it. I think kind of the classic teaching with aortic dissection is that, you know, when that happens it is something that will get your attention and many people will say I knew immediately something was wrong and I usually review that with families not to put fear in them but for them to have that information to know ―― the signs of this are, you know, severe pain that's not going away, not getting better but getting worse, sweating, feeling nauseated, loss of consciousness. It's the type of thing that will really get your attention and hopefully that ends up being like having an umbrella in your car on a nice day. Hopefully that's totally unnecessary and you don't need it but I think knowing that is helpful, particularly in kids where a lot of kids will have chest pain just from growth or if they did an activity they were on a monkey bar and did something different and so I think that's kind of one of the useful things.
僭越ながら最初に回答させていただきます。昔の教科書には大動脈解離について、すぐに異変に気が付くと書いてあります。多くの人が発症後直ちに異変に気がついたとおっしゃると思います。私は患者さんのご家族にその時の状況を振り返ってもらうのですが、恐怖を植え付けるためではなく、危険な徴候について知ってもらうためです。軽快せず悪化の一途をたどる激痛、発汗、吐気、意識喪失といった徴候で、すぐに気が付くと思います。もちろんこうした情報が不要であることを願うばかりですが、知っておけば役立つこともあると思います。特に、多くのお子さんは成長による胸の痛みを感じたり、雲梯など普段とは違う遊びの最中に胸が痛くなることがありますので、参考にしてください。
In general, kind of if you can push on it and press on it and change it in general that's going to speak against something that's kind of deep within the chest like a problem with the aorta and in many cases kind of if you can stretch and change it as well that usually will argue against kind of a more deep pathology. Dr. Bowen, I'd love to hear your thoughts on that as well.
一般に、その部位を押したり、力を加えた時に変化があるのであれば、大動脈疾患のような胸の深い部分で生じている疾患ではないと言えます。また、その部位を伸ばすことができ、それによる変化がある場合には、多くの場合、深い部分に原因があるとは考えにくくなります。これに関してはぜひJuan先生のご意見を伺いたいですね。
Yeah, it's very similar in adults. The, what I tell people is usually this is something that you've never had before and, and you can tell it's bad. Now there are, there are people who have more subtle and they tend to be the elderly, particularly elderly people with diabetes, obviously people with cognitive impairment so and, and then because of the orientation of pain fibers in the aorta, which tend to be on the outside of the aorta, some people have a type of dissection that is such that it just doesn't cause this extreme pain so it can be a problem and I would say that, you know, if you go to the emergency room and get checked that's not a disaster, you know, if you turn, turns out that it was an innocuous problem, so what? Yeah, I would feel good that you didn't have an aortic dissection and I think a lot of our patients do wind up getting, you know, an emergency visit or testing periodically, which is I think that's just part of the story here.
成人でもほぼ同じです。私が患者さんにお伝えしているのは、これまでに経験したことのない痛みだということです。ご本人であればただ事ではないことはわかりますが、中には感じにくい人もおられます。特に糖尿病をお持ちの高齢者や認知症の方も当然該当します。大動脈にある痛みを伝える神経線維は大動脈の外側を走っていることが多いのですが、その向きによっては、激痛が生じない患者さんもいます。この場合は警戒しなければなりません。緊急処置室に足を運んで調べてもらえるようであれば、それほど大きな問題ではありません。何事もないことがわかって安心するだけです。大動脈解離を発症しないに越したことはありませんが、結局のところ、そうした痛みが現れたことで緊急処置室を訪れたり、定期的に検査を受けることになる患者さんは大勢いらっしゃいますが、大事には至らなかったという点に変わりはありません。
Karen, what do you say from, you know, the mental health side of things. I mean you said right one of your last slides that, you know, all the self-talk, I mean, some of it's based in reality and so there are worries so what would you say?
それでは、Karen先生、メンタル的な視点からの回答をお願いします。終盤のスライドで不安は現実に基づいているといったお話がありましたが、この質問はそれに当てはまると思います。どのようなアドバイスがありますか？
Right, well again I mean I can't say this enough. I just really want to validate and normalize that, that fear is realistic just because I feel the fear doesn't mean it's a physical crisis but it's not realistic to ask yourself to not be terrified when you feel something scary and painful that isn't familiar because although they are still rare events, they are events that happen considerably more often within these communities than they do in the general public and that's really where I'm getting at.
明確な回答ではないと思いますが、その恐怖が現実であることを認識して受け入れるということですね。というのも、恐怖イコール身体的な危険ではないからです。とはいえ、なんだかよくわからないもののせいで痛みが生じて恐ろしさを感じているわけなので、怖がるなというほうが無理かもしれません。大動脈解離を発症することは稀だとしても、私達のような病気を抱えた集団では、一般集団よりもずっと発症リスクが高いわけですから。
Okay, so I can tell myself that it's not terribly likely that this is an emergency and there's a decent amount of truth to that but I can't talk myself out of that with the same degree of certainty as somebody without one of these conditions, so it's really a two-fold answer, yes definitely listen to, listen to the experts around, "how are you going to know if it's an emergency?" You don't want to live your life in the emergency room because that's awful in a whole other way but when you're not sure get checked.
自分がそうした状況に陥った時には、多くのエビデンスがあるわけなので、大動脈解離の可能性は非常に低いということを自分に言い聞かせます。ですが、結合組織疾患でない人と比べるとどうかと言われると、同じくらいの可能性とはとても言えません。なので白黒はっきりした回答とはならないのですが、不安なら、やはり専門家を頼るということですね。緊急処置室で余生を送りたくはないと思いますし、しっかりと調べてもらうということです。
It's, it's okay somebody just said something like there's no heroics about not going to the ER or something along those lines, it popped up quickly and then it disappeared but, you know, if you need that reassurance especially as you're learning your body, there's a certain amount of that, that's going to be useful information, and attending to that fear and attending to the anxiety and finding ways to cope with it even apart from those instances where you feel something strange.
「ERに行かなかったことは自慢にならない」という言葉をどこで聞いたことがありますが、一時的に症状が出て、その後でおさまるとしても、ERに行けばいいのです。ご自身の身体のことについては皆さん知識があると思いますし、有益な情報が得られるので損はありません。症状の有無に関わらず、不安や恐怖に耳を傾け、対処法を見つけておきましょう。
I think it was Katie Wright. Somebody coined the term "painxiety," you know, the anxiety that comes any time you feel a pain or an ache for something that's different and it really is a real thing that that patients struggle with within these communities.
痛みが生じた時に感じる不安を意味する"painxiety"という言葉をつくったのはKatie Writeだったと思いますが、我々の患者コミュニティは"painxiety"と戦っているといえます。
The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.
The Marfan Foundation は、当翻訳には関与しておらず、翻訳内容に関してはいかなる承認も行っておりません。このトピックに興味をお持ちの方は、Marfan.org にアクセスし、当協会の専門家から成る諮問委員会が承認した内容をご参照ください。
