Help Yi-Shiuan recover from Kikuchi disease

07 Jun. 2023 更新

有不少人和我反映說此平台轉出手續費較貴，所以直接贊助至我戶頭，

因此比預計的快達到基礎金額，故現在即停止募款了。

再次感謝大家願意直持我相信我!

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嗨大家好，我是陳翊萱，還記得那個時候我正在慶祝拿到 offer，但沒想到之後有個意想不到的大災難正在等著我。

Hi, My name is Yi-Shiuan Chen, and I was just celebrating getting an offer at that time, I didn't know there is a disaster waiting for me.

若想直接看詳細病症經過可以點 在國外確診罕見疾病菊池病是什麼樣的感受

If you want to see the details of the symptoms you can check this article.

或看以下的簡短版敘述

Or check the following short version.

幾天過後， "感覺不太舒服，喉嚨有點痛" 我沙啞的說出這句。

After several days, "That's not comfort, my throat was hurt." I softly said.

我想說應該是小感冒，可能是我太操勞了，喝點熱水然後睡個好覺應該就沒事了。

I assumed it was just a mere sickness, I might just work too hard, only I needed was to drink hot water and take a great sleep.

但我開始感覺喉嚨越來越痛，連食物都吃不下去，然後開始發燒到 38 度；做了 Covid 測試幸好是陰性。

But I started to feel extreme pain in my throat, too hurt to eat solid food. And I continued to have a fever of around 38°C, I did a Covid test, and luckily, it was navigated.

我去看了醫生，醫生說 : 這是扁桃腺發炎，吃個藥就好了。

the doctor said: "It's just tonsillitis, take tablets and you will be fine."

但我持續發燒到 38 度超過一個星期，還是沒辦法吃下任何食物，聞到食物就想吐，一天吐個七八次，吐到肝膽腸胃都要翻過來，後來是直接跪在地上爬到浴室，所以我去掛了急診。

However, I continued to have a fever of around 38°C for over one week, and I couldn't eat any solid food and puked like a sick dog 7 to 8 times, I can barely stand, and I was kneeling in the bathroom, so I went to the emergency.

醫生做了一系列檢查。

"這不是 Covid，可能是因為扁桃腺還在發炎吧，我們直接幫你注射抗生素和止痛退燒藥，然後你就可以回家了。"

Doctors took a series of examinations for me.

"It wasn't Covid, it might be tonsillitis so you were still fevering. We will inject you antibiotics and ibuprofen directly, then you can go home."

可是，這一切根本不是結束。

BUT, THIS IS NOT THE END.

我繼續發燒且開始燒到 39 度，每四小時就會發燒一次，所以我又去了急診室。

I continued to have a fever of 39°C every 4 hours. so again I went to the emergency again.

這次醫生做了 Covid 測試、尿液測試、血液測試，但他們還是不知道在我身上發生什麼事了，他們所能做的只是讓我吃下退燒藥。

This time doctors did Covid test, urine tests, and blood tests, but they didn't find anything, then they only provided me with a painkiller.

幾天過後，醫生要我回醫院再次抽血做檢查。

但，醫生們還是不知道為什麼我會這樣。

After a few days, the doctor asked me to return to the hospital for a blood test.

However, we didn't know the reason.

再一次回診，醫生們還是不知道為什麼我會這樣。

Again, we didn't know the reason.

又再一次回診，醫生們還是不知道為什麼我會這樣。

Again and again, we still didn't know the reason.

又再再再一次回診，醫生們還是不知道為什麼我會這樣。

Again and again and again, we really wanted to know the reason.

然後有一天，我注意到我脖子右邊有個腫塊，而且當我按下去時會痛。

Then one day, I noticed a lump on the right side of her neck, and it was painful when pressed.

醫生幫我做了 CT 檢查，然後跟我說 : 不只是妳的脖子，妳全身都有腫塊。

They did a CT for me, the doctor informed us that it wasn't just my neck; there were also many swollen lymph nodes throughout my body.

"我很抱歉，我們還是不知道妳得到什麼疾病，但有可能是癌症。" 醫生小心翼翼的跟我說道。

"I'm sorry, but we still didn't know the reason for your disease, it might be cancer," the doctor said carefully.

"我們必需做個切片手術，才知道是不是癌症。"

"We need to undergo a biopsy surgery to determine whether it is cancerous or not."

我一邊哭一邊走出診間。

I walked out with tears.

不知道是幸運或不幸運，不是癌症，但是是確診一個罕見疾病 - 菊地氏病 (菊池病)。

It is uncertain whether it is fortunate or unfortunate, but it is not cancer. However, it has been diagnosed as a rare condition called Kikuchi's disease (also known as Kikuchi-Fujimoto disease).

菊地氏病於 1972 年在日本被發現，也被稱為組織細胞壞死性淋巴結炎或菊池-藤本病，復發率約為 3％。

Kikuchi disease was described in 1972 in Japan. It is also known as histiocytic necrotizing lymphadenitis or Kikuchi-Fujimoto disease. The recurrence rate is approximately 3%.

這種疾病在日本是很罕見的。在北美、歐洲、亞洲和英國也只有回報個別的病例，新西蘭則至少有兩例。

This disease is a very rare disease mainly seen in Japan. Isolated cases are reported in North America, Europe, Asia, and England, and at least two cases in New Zealand.

後來我有半年的時間是回去台灣治療的，在台灣時我仍然承受著劇烈的頭部神經痛，一刺痛一整天，一刺痛一個月。做過神經內科、皮膚科、牙科等多次檢查，也仍不知道原因，只好先用癲癇的藥減緩，盡管我沒有癲癇。

I went back to Taiwan to receive treatment. I continued to experience intense episodes of neurological headaches. Each stabbing pain would last for an entire day, and sometimes, a single stabbing pain would persist for an entire month. Despite undergoing multiple examinations, the cause remains unknown. As a temporary measure, I have been prescribed anti-epileptic medication to alleviate the pain, even though I do not have epilepsy.

還有長達半年以上的時間，我起床的例行公事就是吐。刷牙也吐，一天吐好幾次。吐到不能站起來，只好爬著去浴室，更嚴重時是躺在床上不能動，最後只能一個人叫車撐到急診室，然後自己推輪椅。

For more than six months, I have been experiencing constant nausea. I immediately feel the need to vomit in the everyday morning. Even brushing my teeth also make me want to puke, and I vomit several times a day. For serious situations I puke too much to stand, I only can knee down and walk to the bathroom, Sometimes I barely get up from bed, I need to call a taxi and tried so hard to get to an emergency,

中間有請朋友幫過我幾次，但也沒辦法隨時都麻煩他們。

I asked for helps from my friends several time, but they also have their life.

長期生病的關係，容易長時間悶在家裡，而我知道這樣對身心狀況不好，所以在當我覺得有點好轉的時候就會嘗試出門走走。但病情並沒有如我所想的一般順利的持續好轉，每過一陣子都會有一些嚴重的症狀復發。所以時不時會有「上週出門走走，這周每天都痛到/吐到無法下床」的狀況。我仍還再嘗試各種不同的方式讓我回歸正常生活。

Due to being chronically ill, I have to stay at home for a long time, but I am aware that this is detrimental to my overall well-being, so whenever I feel a slight improvement, I try to venture outside for a walk. However, my condition doesn't consistently improve as I had hoped. Every now and then, I experience severe relapses of symptoms after a certain period of time. This leads to situations where I go from "going out for walks last week" to "being in extreme pain or unable to get out of bed due to vomiting every day this week." Nevertheless, I continue to explore various methods in an attempt to regain a sense of normalcy in my life.

按照研究指出，菊池病快的話兩個星期到半年一年就會好起來，但我在台灣時回診各科檢查時，醫生也不理解我為什麼還沒好。

According to the research, I might recover in around two weeks to half a year or a year, but the doctor also doesn't know the reason why I'm not fully recovering.

綜合以上原因，我很難一個人照顧自己。但我沒辦法住家裡，因為跟家裡關係欠佳已經導致我看醫生和服藥十年。

只好去住社宅結果被鄰居整天騷擾，找警衛、叫警察、找社宅經理完全不理我。

最後只好我搬走，為了省錢去住便宜旅館，然後因為一個女性居住，多次被警察臨檢懷疑賣淫不能好好休息。

Due to the aforementioned reasons, it is challenging for me to take care of myself alone. However, I cannot stay at home due to a strained relationship with my family, which has already affected my medical treatment and medication for the past ten years.

I had no choice but to move into public housing, but I ended up facing constant harassment from neighbors. Despite seeking assistance from security guards, calling the police, and contacting the housing manager, my pleas were completely ignored.

In the end, I had to move out and stayed in a cheap hotel to save money. However, being a single woman residing there, I have been subjected to multiple police inspections and unwarranted suspicions of engaging in illegal activities, which have prevented me from getting proper rest.

所以才選擇到英國，由男友幫忙照顧，而我已經欠他很多，也欠朋友很多，現在是負債的情況。

That's why I chose to come to the UK, relying on my boyfriend for assistance in taking care of myself. However, I am already heavily indebted to him and to my friends. Currently, I am in a situation of financial debt.

我經營部落格和撰寫電子報，堅持文章不收費、是因為我希望大家都可以無限制的獲得資訊。

I build a blog where I provide articles free of charge, and I also write newsletters with the intention of ensuring that everyone can access information without any restrictions.

而努力經營各種副業則是希望多少可以貼補醫藥費，如果你可以贊助我，或是幫我轉發，我真的真的會非常感激你。

I'm trying to run various side projects to earn some money for medication, actually, I am in debt. If you can donate to me or share the link, I will be very very grateful.

贊助的資金會用在 :

The foundation will be used for the following thing:

就算是一點小錢對我來說都很重要，可以的話請幫助我度過這個難關，真的很感謝你。

Even little money matters, please sponsor me to overcome difficulties, thank you.

再次感謝你的閱讀。

Thank you for your reading.