一位英国少女患冠后综合征（LongCOVID）16个月，最终在德国获得治疗
After careful consideration, I have decided to go public with this My daughter Jasmin has had #LongCOVID for the past 16 months. I tried for >6 months to get her research bloods done in the UK. Hitting brick walls, in desperation took her to Germany in Feb.
译文简介
twwiter上一位英国母亲公开了女儿的长期新冠，在德国获得一定程度的治愈的过程。
正文翻译
Binita Kane May 7（5月7日）
After careful consideration, I have decided to go public with this My daughter Jasmin has had #LongCOVID for the past 16 months. I tried for >6 months to get her research bloods done in the UK. Hitting brick walls, in desperation took her to Germany in Feb.
经过慎重考虑，我决定公开这件事：我的女儿Jasmin 在过去的 16 个月里都患有冠后综合征（LongCOVID）。我尝试了超过 6 个月的时间在英国进行血液分析。但是毫无用处，我在2月绝望地把她带到了德国。
经过慎重考虑，我决定公开这件事：我的女儿Jasmin 在过去的 16 个月里都患有冠后综合征（LongCOVID）。我尝试了超过 6 个月的时间在英国进行血液分析。但是毫无用处，我在2月绝望地把她带到了德国。
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Her fluorescent microscopy (left) showed very hyperactivated sticky platelets. Mine are on the right for comparison. She also had microclots and evidence of endothelial damage (but latter not severe). I believe she was the first UK child under 12 to have these tests done.
她的荧光显微镜（左）显示非常活跃的粘性血小板。我的在右边进行比较。她还有微凝块和内皮损伤的证据（但后者不严重）。我相信她是第一个完成这些测试的 12 岁以下英国儿童。
（译者注：看照片真的不像12岁以下。。。。。）
她的荧光显微镜（左）显示非常活跃的粘性血小板。我的在右边进行比较。她还有微凝块和内皮损伤的证据（但后者不严重）。我相信她是第一个完成这些测试的 12 岁以下英国儿童。
（译者注：看照片真的不像12岁以下。。。。。）
She was started on treatment and within 2 weeks started improving - energy levels, mood, school attendance, appetite, home tutor (who didn’t know she’s on meds) fed back big improvement in concentration/problem solving. WITHIN 2 WEEKS.
她开始接受治疗，并在 2 周内开始改善 - 精力水平、情绪、到课情况、食欲、家庭教师（不知道她在服药）反馈在注意力/解决问题方面有了很大的改善。 2 周内！
She has continued to improve, but I feel has now reached a plateau, I would say 50% of former self, as opposed to 25%. So it’s definitely not a magic cure, but we'll take it. It feels positive doing something instead of nothing and gives us hope.
她的身体在恢复，但我觉得现在已经达到了一个平台期，我觉得达到了没生病以前的 50%，而不是 25%。所以这并不是灵丹妙药，但我们只能接受。做一些事总比什么都不做更积极，这给了我们希望。
她的身体在恢复，但我觉得现在已经达到了一个平台期，我觉得达到了没生病以前的 50%，而不是 25%。所以这并不是灵丹妙药，但我们只能接受。做一些事总比什么都不做更积极，这给了我们希望。
We have been back to Germany twice since, at great expense. I cannot tell you how brilliant it has been having a doctor who is willing to be curious and try different treatments. I cried the first time we met her, it was emotional.
从那以后，我们已经两次返回德国，费用很高。我无法告诉你拥有一位愿意尝试不同治疗方法的医生是多么的出色。第一次见到她的时候我哭了，很感动。
从那以后，我们已经两次返回德国，费用很高。我无法告诉你拥有一位愿意尝试不同治疗方法的医生是多么的出色。第一次见到她的时候我哭了，很感动。
Though everyone in the UK was very nice, all we had been offered were basic bloods and ‘physio’ (we know we can’t exercise our kids better). Normal tests do not mean there is nothing wrong. It means we are not doing the right tests and need to look harder.
尽管英国的所有人都很好，但我们得到的只是基本的血液和“生理”数据（我们知道这没法让孩子变好）。常规测试并不意味着没有问题。这意味着我们没有做正确的测试，需要更加努力。
尽管英国的所有人都很好，但我们得到的只是基本的血液和“生理”数据（我们知道这没法让孩子变好）。常规测试并不意味着没有问题。这意味着我们没有做正确的测试，需要更加努力。
Don’t get me wrong, she still has a long way to go, but this improvement has been HUGE after the 16 months of hell we have had. The drugs she is on are freely available in the UK, the research techniques of course exist here too which makes it extremely frustrating.
不要误会我的意思，她还有很长的路要走，但是在我们经历了 16 个月的地狱之后，这种改善是巨大的。她使用的药物和研究技术在英国是免费的，但是它们没有效果，让人非常沮丧。
不要误会我的意思，她还有很长的路要走，但是在我们经历了 16 个月的地狱之后，这种改善是巨大的。她使用的药物和研究技术在英国是免费的，但是它们没有效果，让人非常沮丧。
I am determined that treating #LongCovidkids is not going to be just for those with the connections and money. We will NOT leave everyone else behind. I am working hard behind the scenes with an amazing bunch of people to try and kick start this research in the UK for children.
我下定决心，治疗长期新冠不仅仅适合那些有关系和金钱的人。我们不会把其他人抛在后面。我正在与一群了不起的人在幕后努力工作，试图在英国为儿童启动这项研究。
我下定决心，治疗长期新冠不仅仅适合那些有关系和金钱的人。我们不会把其他人抛在后面。我正在与一群了不起的人在幕后努力工作，试图在英国为儿童启动这项研究。
But I am not a paediatrician or researcher and have no guaranteed funding, so it’s an uphill battle. Despite this, we are very close to getting something off the ground. Individuals have been incredibly kind, helpful and generous with their time. Things are slowly coming together
但我不是儿科医生或研究人员，也没有保证资金，所以这是一场艰苦的战斗。尽管如此，我们还是非常接近于取得进展。人们非常友善、乐于助人和慷慨。事情慢慢走到了一起。
原创翻译：龙腾网 http://www.ltaaa.cn 转载请注明出处
但我不是儿科医生或研究人员，也没有保证资金，所以这是一场艰苦的战斗。尽管如此，我们还是非常接近于取得进展。人们非常友善、乐于助人和慷慨。事情慢慢走到了一起。
原创翻译：龙腾网 http://www.ltaaa.cn 转载请注明出处
However, at this rate it will take at least 2 years before UK children have access to same drugs my daughter is on, as we will need to prove the concept, then undertake a RCT. This is correct and proper, but could be accelerated if there was a WILL to make it happen.
然而，按照这个速度，英国儿童至少需要 2 年才能获得我女儿使用的相同药物，因为我们需要证明这个概念，然后进行 RCT。这是正确的，但如果有意愿应该可以加速。
然而，按照这个速度，英国儿童至少需要 2 年才能获得我女儿使用的相同药物，因为我们需要证明这个概念，然后进行 RCT。这是正确的，但如果有意愿应该可以加速。
I must stress that treatment should be under supervision and parents should NOT under any circumstances try treatments without a doctor overseeing it. I will not share what treatment my daughter is on (so please don’t ask). Again, it is not a cure, just part of the puzzle.
我必须强调，治疗应该在监督下，父母在任何情况下都不应该在没有医生监督的情况下尝试治疗。我不会分享我女儿的治疗方法（所以请不要问）。同样，它不是完全100%的治愈方法，这只是难题的一部分答案。
我必须强调，治疗应该在监督下，父母在任何情况下都不应该在没有医生监督的情况下尝试治疗。我不会分享我女儿的治疗方法（所以请不要问）。同样，它不是完全100%的治愈方法，这只是难题的一部分答案。
We need to move away from arguing about whether or not COVID harms children to finding solutions. Treatments for those who are ill, ways to protect children from repeated infection through cleaning up the air and better public health messaging. Enough now, it’s time to move on.
我们需要从争论新冠病毒是否会伤害儿童，转向寻找解决方案。为生病的人提供治疗，通过净化空气和更好的公共卫生信息来保护儿童免受反复感染的方法。是时候继续前进了。
我们需要从争论新冠病毒是否会伤害儿童，转向寻找解决方案。为生病的人提供治疗，通过净化空气和更好的公共卫生信息来保护儿童免受反复感染的方法。是时候继续前进了。
Also want to shout out to the #MECFS community or anyone who's has suffered post-viral illness. You have endured so much suffering. I'm sorry it has taken #longcovid to open the eyes of (some of) the scientific and medical community. Thank you for your support and help.
还想向#MECFS 社区或任何遭受病毒后疾病的人宣传。很抱歉你承受了那么多苦难。长期新冠让（部分）科学和医学界大开眼界。感谢您的支持和帮助。
还想向#MECFS 社区或任何遭受病毒后疾病的人宣传。很抱歉你承受了那么多苦难。长期新冠让（部分）科学和医学界大开眼界。感谢您的支持和帮助。
Finally, I am so grateful to the brave and caring doctor in Germany who has treated Jasmin. Curiosity, compassion, care, determination to help. My daughter has a semblance of her life back. Also for those who facilitated it (you know who you are). I will keep you all posted. END
最后，非常感谢勇敢、有爱心的德国医生为茉莉治病。感谢她的好奇心、同情心、关怀。我的女儿已经恢复了她的生活。
原创翻译：龙腾网 http://www.ltaaa.cn 转载请注明出处
最后，非常感谢勇敢、有爱心的德国医生为茉莉治病。感谢她的好奇心、同情心、关怀。我的女儿已经恢复了她的生活。
原创翻译：龙腾网 http://www.ltaaa.cn 转载请注明出处
None of this would have been possible without @resiapretorius and her pioneering work. This research is trying to fund itself internationally - if you can contribute the lix is here;
没有@resiapretorius和她的开创性工作这一切就不可能发生。这项研究试图在国际上为自己提供资金——如果你可以贡献链接，请点击此处。（译者注：翻译到这里感觉怪怪的，像个骗子似的。。。。。）
没有@resiapretorius和她的开创性工作这一切就不可能发生。这项研究试图在国际上为自己提供资金——如果你可以贡献链接，请点击此处。（译者注：翻译到这里感觉怪怪的，像个骗子似的。。。。。）
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@BinitaKane May 7 The platelets and microclots show that her blood is 'hypercoaguable' - too sticky. These may be blocking up the very small blood vessels that allow oxygen into muscles and nerves, which could explain some of her symptoms. 'Fatigue' = tissue hypoxia? Autonomic dysfunction = SFN?
血小板和微凝块显示她的血液“高凝”——太粘了。这些可能阻塞了允许氧气进入肌肉和神经的非常小的血管，这可以解释她的一些症状。 “疲劳”=组织缺氧？自主神经功能障碍 = SFN？
@RealHumptyB May 7 Big admirer #German HS but extraordinary if #NHS not offering tests to detect this kind of thing.
赞#German HS，但如果#NHS 不提供检测这种事情的测试，那就非同寻常了。
@Psyche_und_mehr M
Unfortunately the German health system ist not much better than the NHS. Only a few doctors try to treat LongCovid and these new treatments are not covered by the health insurances.
不幸的是，德国的卫生系统并不比 NHS 好多少。只有少数医生尝试治疗长期新冠，而这些新疗法不在健康保险范围内。
Antiphospholipid syndrome (also called Hughes syndrome) has been recognised for years but has never been adequately treated or funded. This is but one autoimmune disease that covid is triggering.
抗磷脂综合征（也称为休斯综合征）已被认可多年，但从未得到充分治疗或资助。这只是新冠病毒引发的一种自身免疫性疾病。
@emmiweberwebde1
Schlimm, wie perfide Covid dort in die Gerinnung eingreift. Hoffentlich verbessert sich das vor allem langfristig durch entsprechende Behandlung.
糟糕的是，狡猾的新冠病毒如何影响凝血能力。
希望通过适当的治疗，这种情况会有所改善，尤其是从长远来看。
@yperjudgement
Would you be so kind to share also whether she has received the experimental wanna-be "vaccine" genetic therapy medical products for COVID-19 (and if yes, which one) before or after she was diagnosed positive with COVID-19??? Wish all the best for a full and speedy recovery!
您是否愿意分享一下她在被诊断出 COVID-19 呈阳性之前或之后是否接受过用于 COVID-19 的实验性“疫苗”基因治疗医疗产品（如果是，是哪一种）？祝一切顺利，早日康复！
@LogicalKangaroo
Replying to @yperjudgement and @BinitaKane
She said it's been 16 months which is long before any vaccines were being given to children. If you are implying the vax caused this (it obviously didn't), why would you think the actual fully replicating virus wouldn't be magnitudes worse?
她说已经有 16 个月了，这比给儿童接种任何疫苗还早。如果您暗示 vax 导致了这种情况（显然没有），您为什么认为疫苗比完全复制的病毒更糟呢？
@helengrimbley
Very interesting. The implications seem clear for Long Covid. What about the consequences of this for other newly identified illnesses post COVID infection?
长期新冠的影响似乎很明显。这对新冠感染后其他新发现的疾病有何影响？
@MchP66592467
Happy to hear she is better. Everything you said here makes complete sense and aligns with my personal experience as well. This theory explains most if not all of the problems and symptoms I’ve been experiencing for the last 10 months.
很高兴听到她好多了。你在这里所说的一切都完全有道理，也符合我的个人经历。这个理论解释了我在过去 10 个月中遇到的大部分问题和症状。
原创翻译：龙腾网 http://www.ltaaa.cn 转载请注明出处
@Priceless20201
So pleased to hear of your daughters improvement and wishes for a full recovery thankyou for sharing and giving hope to help the thousands of neglected longcovid kids. It pains me everyday that every minute we let this virus rip is ruining another child's and adults life
很高兴听到您的女儿有所改善并希望完全康复，感谢您分享并给予希望以帮助成千上万被忽视的长期新冠儿童。每天让我痛苦的是，我们让这种病毒肆虐的每一分钟都在毁掉另一个孩子和成年人的生活
@sensoryacuity
Sounds like a hellish ordeal. Glad your daughters had a break through and hope the next one is on the near horizon. Well done for speaking up
听起来像是地狱般的考验。很高兴你的女儿们取得了突破，并希望下一个突破即将到来。
原创翻译：龙腾网 http://www.ltaaa.cn 转载请注明出处
@aclaudiacvs
This is so interesting …may I ask what are the drugs? Or the protocol ? As a pediatric hematologyst I would like to read more about
这太有趣了……请问是什么药？作为一名儿科血液学专家，我想了解更多关于 .
@notyourmomsmasc
! So glad you were able to access care for your daughter. What tests were used to screen for microclots and endothelial damage?
很高兴你的女儿获得照顾。哪些测试用于筛查微凝块和内皮损伤？
was she vaccinated?
她接种过疫苗吗？
原创翻译：龙腾网 http://www.ltaaa.cn 转载请注明出处
@redheadlass1402
Given she’s had long covid for 16 months and the vaccines only started rolling out to younger age groups about 8 months or so ago what are you implying ?
鉴于她已经感染了 16 个月的新冠病毒，而且疫苗大约在 8 个月左右前才开始向年轻群体推出，你在暗示什么？
@Am_notatwit
I'm experiencing this too. Thank you for sharing, it will help others gain an insight into what is going on as we've been ignored in the current apathetic approach. I hope your daughter continues to progress.
我也在经历这个。感谢您的分享，它将帮助其他人深入了解正在发生的事情，因为我们正在被麻木冷漠的忽略。希望你的女儿痊愈。
@Leviathis
It shocked me to hear, that you had to go to a different country for your daugther's treatment, but I am glad, our german doctors could help a bit. I hope your child will be better soon. Good luck to both of you.
听到您不得不去另一个国家接受女儿治疗的消息让我感到震惊，但我很高兴，我们的德国医生可以提供一些帮助。我希望你的孩子会很快好起来。祝你们俩好运。
@JDelarosiere
What’s the point of sharing the story if you withhold the information that may help others? Sad is the attitude…
如果您隐瞒可能有助于他人的信息，那么分享这个故事有什么意义？可悲的是态度……
@tadbithuman
Thank you and best wishes for you and Jasmin.
谢谢你，并为你和 Jasmin 致以最美好的祝愿。
原创翻译：龙腾网 http://www.ltaaa.cn 转载请注明出处
@buckleydebbie
hank you for having the courage to share this, it will help and give hope to many, myself included
感谢您有勇气分享这个，它将帮助并给许多人带来希望，包括我自己
@seelieness
I am curious if your daughter had livedo reticularis rash? My daughter had a very pronounced rash for 2 weeks. People kept saying it was normal when you have a high temp, but this lasted well beyond that.
我很好奇你女儿有没有网状青斑疹？我女儿的皮疹非常明显，持续了 2 周。人们一直说当你有高温时这是正常的，但这持续的时间远不止于此。
她生病时距离接种疫苗还有 2 天，需要 12 周才能完全康复，但我很感激她已经康复。你女儿发生的事情是一场噩梦，我希望能找到治疗方法。
原创翻译：龙腾网 http://www.ltaaa.cn 转载请注明出处