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        38歲創業者突發怪病,在社交媒體上記錄確診過程

        38歲創業者突發怪病,在社交媒體上記錄確診過程

        Kristine Gill 2022-11-28
        拉姆齊·亨特綜合征是帶狀皰疹或者水痘的并發癥,這兩種疾病均由水痘-帶狀皰疹病毒導致。


        Megababe創始人凱蒂·斯圖里諾。圖片來源:COURTESY OF MAGABABE AND KATIE STURINO

        先是耳朵疼。

        今年9月,凱蒂·斯圖里諾一覺醒來感到疲勞疲憊,渾身不舒服,并且癥狀很快加重。斯圖里諾是一位宣傳提高身體接受度的Instagram網紅,也是化妝品品牌Megababe的創始人。

        她說:“最初癥狀很輕,但在四天內不斷加重?!?/p>

        一種看起來很簡單的癥狀持續了數周,在這個過程中,斯圖里諾知道了應對一種看不見的疾病所面臨的困難,以及在醫療體系中為自己發聲的重要性。

        斯圖里諾去看了急癥門診,醫生了解到她的寵物狗最近染上萊姆?。↙yme disease)后,給她開了一種抗生素,以免她同樣感染。

        斯圖里諾從此開始在網絡上探索有關這種疾病的神奇世界。這種疾病經常被誤解,并且可能被誤診長達幾個月。

        她表示:“我一度覺得自己先人一步?!痹诩卑Y門診,醫生進行了萊姆病檢測,在等待最終結果期間,斯圖里諾在社交媒體上分享了自己的擔憂。

        很快,她的粉絲們分享了自己患萊姆病的經歷,以及知道如何治療這種疾病的醫生給出的建議。但看完急癥門診幾天后,她又出現了一種癥狀。這一次,斯圖里諾發現自己的右臉失去知覺。她從鏡子里看到自己右邊的眼睛和臉頰下垂。她感覺舌頭變厚并且行動遲緩。她變得言語不清,于是她把自己的最新癥狀告訴Instagram上的粉絲。

        凱蒂·斯圖里諾所患的疾病引發了面癱。圖片來源:COURTESY OF KATIE STURINO

        她說:“出現面癱之后,家人和朋友開始認真對待我的病情。當我說自己耳朵痛和感覺不舒服時,沒有人覺得嚴重?!?/p>

        斯圖里諾表示,她出現了萊姆病造成的神經并發癥。與此同時,她還在等待萊姆病檢測結果。但后來她已經不需要這些結果了。幾天后,她的耳朵腫脹,不得不去急診。在急診室里,她才知道自己患上了帶狀皰疹。

        帶狀皰疹可能演變成拉姆齊·亨特綜合征(Ramsay Hunt syndrome),影響耳朵附近的面部神經,引起面癱??死蛱m診所(Cleveland Clinic)解釋道,拉姆齊·亨特綜合征是帶狀皰疹或者水痘的并發癥,這兩種疾病均由水痘-帶狀皰疹病毒導致。如果在幼年曾經患過水痘,成年后休眠的病毒被激活后就會引發帶狀皰疹。尤其是當病毒在面部神經重新激活時,會造成嚴重的耳朵痛和面癱,這種癥狀被稱為拉姆齊·亨特綜合征。

        歌手賈斯汀·比伯在今年夏天也曾經出現過這種癥狀。他在社交媒體上簡單介紹了自己的癥狀,然后停更去接受治療??死蛱m診所表示,這是一種罕見病,每年只有十萬分之五的美國人會染病。

        醫生得知斯圖里諾有帶狀皰疹后,還排除了另外一種會導致面癱的類似疾病貝爾麻痹癥(Bell’s Palsy)??死蛱m診所稱,有7%面癱病例的病因是貝爾麻痹癥。但這兩種疾病都很難確診,因此這些數字可能并不代表真實情況。

        確診后,醫生為斯圖里諾開了多種治療帶狀皰疹的新藥,包括維德思(Valtrex,用于治療帶狀皰疹、水痘和皰疹),以及膳食補充劑和一種類固醇藥物。她還聽從部分粉絲的建議,開始面部針灸,以幫助治療面癱。她說針灸讓她的癥狀在大約兩周內得以緩解。

        她表示:“我認為針灸讓我更快康復?!痹谇巴痹\室后大約10天內,她感覺自己的病情有所好轉??死蛱m診所估計,約70%的患者完全康復,但有部分患者變成了永久性面癱或者失聰。

        斯圖里諾認為自己很幸運。首先,她獲得了“良好”的成人醫療保險保障,而且她敢于為自己發聲。她的品牌Megababe專注于個人護理產品,被用于經常被忽視的病癥,比如大腿摩擦。她可以與粉絲坦言自己的狀況,并感謝粉絲們的針灸建議甚至他們有關治療萊姆病的建議,這些建議引導她找到了正確的治療方向。

        她指出:“在我感覺非常脆弱的時候展示臉部的狀況,與我所從事的核心事業絕對密切相關。我所做的就是讓人們關注那些很少被討論的領域?!?/p>

        如果她對分享自己的癥狀感到尷尬,她可能就會沒有勇氣尋求其他治療。

        她說:“如果女性在沒有任何身體癥狀的時候去看醫生,醫生就會告訴你減肥,服用抗抑郁藥物。如果你患有自體免疫疾病,你就只能找專業醫生,否則你可能很容易被打發走,這太瘋狂了?!?/p>

        在出現面癱癥狀之后,她很容易就被確診。

        但即使接受了治療,斯圖里諾依舊無法解釋這些癥狀和病癥之間的相互聯系。

        她表示:“這種疾病不太為人所知,也超出常識能夠理解的范圍。我和大家就像是互聯網上的獵犬一樣,試圖找出答案?!?/p>

        后來有更多存在類似問題的患者成為斯圖里諾的粉絲,他們表示很高興有人為這種疾病發出倡議。

        斯圖里諾說:“我終于恢復了元氣,但又過了一個月我的身體才有所好轉?!保ㄘ敻恢形木W)

        譯者:劉進龍

        審校:汪皓

        先是耳朵疼。

        今年9月,凱蒂·斯圖里諾一覺醒來感到疲勞疲憊,渾身不舒服,并且癥狀很快加重。斯圖里諾是一位宣傳提高身體接受度的Instagram網紅,也是化妝品品牌Megababe的創始人。

        她說:“最初癥狀很輕,但在四天內不斷加重?!?/p>

        一種看起來很簡單的癥狀持續了數周,在這個過程中,斯圖里諾知道了應對一種看不見的疾病所面臨的困難,以及在醫療體系中為自己發聲的重要性。

        斯圖里諾去看了急癥門診,醫生了解到她的寵物狗最近染上萊姆?。↙yme disease)后,給她開了一種抗生素,以免她同樣感染。

        斯圖里諾從此開始在網絡上探索有關這種疾病的神奇世界。這種疾病經常被誤解,并且可能被誤診長達幾個月。

        她表示:“我一度覺得自己先人一步?!痹诩卑Y門診,醫生進行了萊姆病檢測,在等待最終結果期間,斯圖里諾在社交媒體上分享了自己的擔憂。

        很快,她的粉絲們分享了自己患萊姆病的經歷,以及知道如何治療這種疾病的醫生給出的建議。但看完急癥門診幾天后,她又出現了一種癥狀。這一次,斯圖里諾發現自己的右臉失去知覺。她從鏡子里看到自己右邊的眼睛和臉頰下垂。她感覺舌頭變厚并且行動遲緩。她變得言語不清,于是她把自己的最新癥狀告訴Instagram上的粉絲。

        她說:“出現面癱之后,家人和朋友開始認真對待我的病情。當我說自己耳朵痛和感覺不舒服時,沒有人覺得嚴重?!?/p>

        斯圖里諾表示,她出現了萊姆病造成的神經并發癥。與此同時,她還在等待萊姆病檢測結果。但后來她已經不需要這些結果了。幾天后,她的耳朵腫脹,不得不去急診。在急診室里,她才知道自己患上了帶狀皰疹。

        帶狀皰疹可能演變成拉姆齊·亨特綜合征(Ramsay Hunt syndrome),影響耳朵附近的面部神經,引起面癱??死蛱m診所(Cleveland Clinic)解釋道,拉姆齊·亨特綜合征是帶狀皰疹或者水痘的并發癥,這兩種疾病均由水痘-帶狀皰疹病毒導致。如果在幼年曾經患過水痘,成年后休眠的病毒被激活后就會引發帶狀皰疹。尤其是當病毒在面部神經重新激活時,會造成嚴重的耳朵痛和面癱,這種癥狀被稱為拉姆齊·亨特綜合征。

        歌手賈斯汀·比伯在今年夏天也曾經出現過這種癥狀。他在社交媒體上簡單介紹了自己的癥狀,然后停更去接受治療??死蛱m診所表示,這是一種罕見病,每年只有十萬分之五的美國人會染病。

        醫生得知斯圖里諾有帶狀皰疹后,還排除了另外一種會導致面癱的類似疾病貝爾麻痹癥(Bell’s Palsy)??死蛱m診所稱,有7%面癱病例的病因是貝爾麻痹癥。但這兩種疾病都很難確診,因此這些數字可能并不代表真實情況。

        確診后,醫生為斯圖里諾開了多種治療帶狀皰疹的新藥,包括維德思(Valtrex,用于治療帶狀皰疹、水痘和皰疹),以及膳食補充劑和一種類固醇藥物。她還聽從部分粉絲的建議,開始面部針灸,以幫助治療面癱。她說針灸讓她的癥狀在大約兩周內得以緩解。

        她表示:“我認為針灸讓我更快康復?!痹谇巴痹\室后大約10天內,她感覺自己的病情有所好轉??死蛱m診所估計,約70%的患者完全康復,但有部分患者變成了永久性面癱或者失聰。

        斯圖里諾認為自己很幸運。首先,她獲得了“良好”的成人醫療保險保障,而且她敢于為自己發聲。她的品牌Megababe專注于個人護理產品,被用于經常被忽視的病癥,比如大腿摩擦。她可以與粉絲坦言自己的狀況,并感謝粉絲們的針灸建議甚至他們有關治療萊姆病的建議,這些建議引導她找到了正確的治療方向。

        她指出:“在我感覺非常脆弱的時候展示臉部的狀況,與我所從事的核心事業絕對密切相關。我所做的就是讓人們關注那些很少被討論的領域?!?/p>

        如果她對分享自己的癥狀感到尷尬,她可能就會沒有勇氣尋求其他治療。

        她說:“如果女性在沒有任何身體癥狀的時候去看醫生,醫生就會告訴你減肥,服用抗抑郁藥物。如果你患有自體免疫疾病,你就只能找專業醫生,否則你可能很容易被打發走,這太瘋狂了?!?/p>

        在出現面癱癥狀之后,她很容易就被確診。

        但即使接受了治療,斯圖里諾依舊無法解釋這些癥狀和病癥之間的相互聯系。

        她表示:“這種疾病不太為人所知,也超出常識能夠理解的范圍。我和大家就像是互聯網上的獵犬一樣,試圖找出答案?!?/p>

        后來有更多存在類似問題的患者成為斯圖里諾的粉絲,他們表示很高興有人為這種疾病發出倡議。

        斯圖里諾說:“我終于恢復了元氣,但又過了一個月我的身體才有所好轉?!保ㄘ敻恢形木W)

        譯者:劉進龍

        審校:汪皓

        It started with ear pain.

        Back in September, Katie Sturino, a body acceptance Instagram influencer and founder of the beauty product brand Megababe, woke up feeling tired and overall just weird. Her symptoms soon escalated.

        “It started light then ramped up over a four-day period,” she says.

        A seemingly straightforward symptom would start a weeks-long journey in which Sturino learned about the difficulty of dealing with an invisible illness and the importance of advocating for herself in the healthcare system.

        Sturino went to an urgent care clinic where a doctor, learning Sturino’s dog had recently contracted Lyme disease, prescribed an antibiotic in case Sturino had also contracted it, too.

        That sent Sturino down an internet rabbit hole on the disease, which is notoriously misunderstood and can go undiagnosed for months.

        “I felt like I was ahead of the curve for a second,” she says. At the urgent care, doctors performed a Lyme disease test and Sturino shared her concerns on social media while she awaited definitive results.

        Her followers were quick to share their stories of living with Lyme disease and suggestions for doctors who understood how to treat it. But a few days after her urgent care visit, another symptom appeared. This time Sturino woke to find the right side of her face was numb. Looking in the mirror she saw that her eye and cheek were drooping. Her tongue felt thick and slow. She struggled to speak clearly as she took to Instagram to inform followers of her latest symptom.

        “Once I had the facial paralysis, people took me seriously,” she says of friends and family. “Complaining about ear pain and not feeling well, nobody took me seriously.”

        Sturino figured she was experiencing neurological complications from Lyme disease. In the meantime, she was still waiting on her Lyme test results. She wouldn’t need them. Over the next few days her ear swelled to the point where she had to visit the emergency room. It was there that she learned she had shingles.

        And shingles, it turns out, can turn into Ramsay Hunt syndrome when it affects a facial nerve near the ear, causing facial paralysis. The Cleveland Clinic explains that Ramsay Hunt is a complication of either shingles or chickenpox, which are caused by the varicella-zoster virus. If you had chickenpox as a kid, you can develop shingles as an adult when the dormant virus reactivates. And when the virus reactivates specifically in your facial nerve, it causes intense ear pain and facial paralysis, called Ramsay Hunt syndrome.

        It’s the same syndrome singer Justin Bieber came down with over the summer, which he talked about briefly before disengaging from social media to heal. Still, it’s a rare disease, one that only five in 100,000 Americans develop each year, according to the Cleveland Clinic.

        Bell’s Palsy, a similar disease causing facial paralysis, was also ruled out once doctors learned Sturino had shingles. Bell’s Palsy is responsible for 7% of facial paralysis cases, according to the Cleveland Clinic. But because both conditions are difficult to diagnose, those numbers don’t likely paint the whole picture.

        Once she had a firm diagnosis in hand, Sturino was given new meds for the shingles including Valtrex (used in the treatment of shingles, chickenpox, and herpes), supplements, and a steroid. She also started getting acupuncture done to her face, at the suggestion of some of her followers, to help with the paralysis. She credits it with relieving her symptoms within about two weeks.

        “I do think acupuncture helped me recover faster,” she says. Within about 10 days of her ER visit, she was feeling better. The Cleveland Clinic estimates about 70% of patients make a full recovery while some experience permanent facial paralysis or hearing loss.

        Sturino counts herself lucky. She has “good” health insurance for the first time in her adult life, and she’s not afraid to advocate for herself. Her brand Megababe focuses on personal care products for conditions that are often ignored: think thigh chafing. She’s comfortable being candid with her followers, and credits their info on acupuncture and even their tips on Lyme disease with steering her on the right path.

        “Showing my face when I was feeling really vulnerable definitely connects to the core of what I do, which is just shining a light on places that don’t get discussed,” she says.

        Had she felt embarrassed to share her symptoms she might have been discouraged about seeking additional treatment.

        “For women, going to a doctor’s office without a physical symptom, they’re going to tell you to lose weight, get on this depression medication,” she says. “It’s so crazy that you have to find a specialized doctor to deal with an autoimmune disease because otherwise you’re so easily dismissed.”

        Once she experienced facial paralysis, she had an easier time finding a diagnosis.

        Yet even after dealing with the disease first hand, Sturino still struggles to explain how all of the symptoms and conditions were linked.

        “This isn’t a known thing. It’s not common knowledge. It’s me and you being internet sleuths and trying to figure it out,” she says.

        Sturino has since gained new followers who have had similar problems, people who say it’s nice to have an advocate for the disease.

        “I finally have my energy back, but it took another month before I felt better,” she says.

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