Raune

Raune.. 雑貨Artist！ レザーアイテム重視、ヴィンテージhandmade。。 お手持ちの洋服リメイクなどもオーダー受付てます☆ 【一切型紙無いデス。。その時その時のピピってくるものだけの世界に一つアイテム】も☆☆ ですが〜 好きな物多くて‥^^;大好きな物載せてマス。。文句ありの‥愚痴‥ありの‥w人生も

[図星 @zuboc]

まさか緊急地震速報もハッキングされたんじゃなかろうな。

[Raune @Rauneywn]

@IObousan …💧

[Raune @Rauneywn]

@RuikaSendaiJp 同じデス！
やめて欲しい〰️
ホントにヤバイ時だけにして欲しいデスよね〰️
まだ　心臓ドキドキ止まりません(´；ω；｀)

[Raune @Rauneywn]

@maririn_uranai 🦌

[ツルハドラッグ公式 @tsuruhaofficial]

X限定🎁キャンペーン
1⃣@tsuruhaofficialをフォロー
2⃣本投稿RP

/／
大切なのは腸内環境
\＼

☑整腸＆消化促進のW作用
【酪酸菌(宮入菌®)】❌【ウルソデオキシコール酸】

[指定医薬部外品]#ミヤフローラ®EX(230錠)
抽選で100名様🎁

RP期限 2026/3/31(火)23:59
詳細 https://t.co/wT3zamG0t2
※当選通知はXのチャット（旧ダイレクトメッセージ）からお送りいたします。
※チャットの受け取りにはX上でパスコードの設定が必要です。
※パスコードの未設定によりチャットを受け取れなかった場合、当選が無効になる可能性があります。

[Raune @Rauneywn]

@ao_healer 💫

[Raune @Rauneywn]

@8Tamayo8 🙏

[Raune @Rauneywn]

@nova_spimagic 🌙

[Raune @Rauneywn]

@enmusubi_renai_ 🙏

[Raune @Rauneywn]

@haku_twinflame 🌈

[Raune @Rauneywn]

@haku_twinflame 🕊

[Raune @Rauneywn]

@zt__ 🔔

[Raune @Rauneywn]

@kmitch305 🐉　🙏

[Raune @Rauneywn]

@badassceo 嫌でも思い出してしまう。何度も何度も許せてきたｹﾄﾞ‥記憶からけせない。。消したくても消えない。何度も何度も疑いながらも信じて結局裏切られて。。25年。

[Testosterone @badassceo]

Hello Elon San @elonmusk

Could you please take a look at the attached tweet and help them spread the word? Basically, there son has a genetic disorder called junctional epidermolysis bullosa. Since it’s such a rare disease, they can’t find any valid treatment in Japan and their son’s life is in great danger.

If you take a look at the statistics of the attached tweet, you can see that almost all the Japanese Twitter users has seen it, but we want this tweet to go world wide to raise the probability of finding the right treatment.

Please please help them.

Below is the translation of the attached tweet.

———————————————

Today's video is a video of a request to all of you.
Last year we found out that our first son, born to us, has a genetic disorder called junctional epidermolysis bullosa.

Epidermolysis Bullosa is a disease that has many different forms, ranging in severity from mild to fatal.
My son's form is the most severe form.

We also spoke to people who are considered epidermolysis bullosa specialists,
Frankly speaking, the number of patients with epidermolysis bullosa is very small, and depending on the literature, death often occurs within the first year of life, so we are not sure if this is the case.

Even the specialists answered that they do not know what they can do other than symptomatic treatment.

There are currently no active treatments or clinical trials in Japan, and there is almost no chance of success.
We contacted overseas research institutes and medical institutions.

We also tried a treatment that was probably the first of its kind in Japan, but it was not effective.

However, if we give up now, our son will surely die in the not-so-distant future.
However, we do not have the option to just do nothing and face that day.
We have no choice but to do nothing and face that day.

That's why I made this video to ask for your help.

We would like you to translate this video and our message into various languages and spread it on various social networking sites.

Also, if you are a researcher who has seen these posts, or have information to share, please contact us at

[email protected]

[Testosterone @badassceo]

お願いがあります。

このツイートを拡散してくれるとすごく助かります。

良い治療法が見つかることを心から願っています。

[堀江裕介/クラシル @yusuke_horie]

私の友人夫婦に昨年お子さんが産まれました。とても明るい夫婦で本当に素敵な夫婦です。なかなか出産されてからお会いできないなと思っていましたが今年に入って久しぶりに話したところ、お子さんが表皮水疱症の接合部型という難病を罹っていて苦労されていると話をしてくれました。とても珍しい病気でまだ対処療法しかない現状で日本にも専門医がいないそうです。医療機関からはいつ致死的な状況になってもおかしくないと言われています。

諦めずに友人夫婦はこの病気を改善する方法を世界中から探しています。良い治療法や、良いお医者さん、研究者の方少しでも良いので力を貸していただけませんでしょうか？
医療関係者でない方も出来れば拡散などでご協力していただけたら幸いです。お子さんにとって少しでも良い治療法があることを祈っています。

A friend of mine and her husband had a baby last year. They are a very cheerful couple and really nice. I had not seen them since the birth of their child, but when I spoke to them again after a long time this year, they told me that their child had an intractable disease called Junctional Epidermolysis Bullosa and that they were having a hard time. It is a very rare disease, and no specialists exist in Japan. Medical institutions say that it could turn fatal at any time.

Not giving up, my friend and her husband are searching worldwide for ways to improve this disease. We are looking for good treatments, good doctors, and researchers who can lend them a helping hand, even if it's only a little.
Even if you are not in the medical field, we would appreciate it if you could help us by spreading the word. We hope that better treatment will be found for the children and that a happy life will come for them.

[Raune @Rauneywn]

#greensnap に投稿しました。 https://t.co/DsxDjad3VX #部屋 #太陽ﾀﾞｲｽｷ #my family #青空がスキ #あったか日 #植物

[Raune @Rauneywn]

#greensnap に投稿しました。 https://t.co/ywHuiD6K21 #部屋 #リド様……経過 #太陽ﾀﾞｲｽｷ #ビカクシダ・リドレイ #ビカクさん #青空がスキ #ビカク勉強中！