5:28-7:26
So there's a small body of research in pain in Marfan syndrome and this screen highlights two studies: one was done by Dr. Nelson based out in Chicago and she was one of the first people to show that pain is occurring kind of everywhere in the body and individuals with Marfan syndrome.
小規模ではありますが、マルファン症候群の痛みについて行われた調査があります。このスライドにあるのは2つの研究結果で、1つはシカゴのNelson医師が行ったものです。Nelson医師は、マルファン症候群の患者さんでは、体のどの部分にも痛みが生じているということを初めて突き止めた医師の1人です。
So as you can see here, back pain is kind of the most reported pain, but certainly people also have headaches, shoulder pain, joint pain, and pain in their legs and their feet as well as abdominal pain.
ご覧の通り、背中の痛みの訴えが最も多いのですが、頭痛や肩の痛み、関節痛、脚や足の痛み、お腹の痛みを訴える方もいます。
And in general, individuals with Marfan syndrome will kind of report their pain on average about 5 on 0 to 10 scale. So clinically we think about that as kind of a moderate level of pain.
一般に、マルファン症候群の患者さんでは、痛みを0から10で表した場合に自分の痛みを5と表現します。つまり、臨床的には中程度の痛みということになります。
And some of the work that I've done in the pain field was to kind of again characterize pain and individuals with Marfan syndrome and in a survey that we had on the Marfans at our website, we had out of the respondents 89% said that pain is very common for them.
私がマルファン患者さんに行った調査では、89%の方が頻繁に痛みを経験すると回答しました。
Some other facts that we found out about individuals in Marfan syndrome is that for those who do report pain, most people experience pain more than 50 percent of the time.
調査から明らかになったことは、痛みを訴えたマルファン患者さんのうち、ほとんどの方が生活時間の半分以上で痛みを経験しているいうことです。
Almost everyone says they have sudden increases in their pain in addition to their baseline pain, and three-quarters of people said that when pain is added, it's worst; they would describe it as horrible or excruciating.
また、ほとんどの方が、元々感じている痛みにプラスして突然痛みが強くなると言い、約75%の方が、その痛みはとんでもない痛みで、「恐ろしい」とか「地獄の苦しみ」などと表現されます。
Unfortunately, less than half of individuals who took the survey said that they were satisfied with their current pain management, and again, almost three-quarters of individuals said that their pain never goes into remission or never goes away.
そして残念なことに、今受けている痛みの治療に満足している方は半分以下ということでした。また、約75％の方が痛みが収まったり、無くなったりすることはないという回答でした。
And finally there was only about 41% of people who said that their pain was actually not diagnosed or not given a clear diagnosis.
最後ですが、 41%の方が痛みを診断されていなかったり、明確な診断名がついていないということがわかりました。
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。
