The latest aHUS patient organisation to affiliate to the alliance is aHUS Kids Japan. They introduce themselves in their own words with English translations.
aHUS kids Japan 患者会設立のお知らせ
この度、小児非典型溶血性尿毒症症候群（aHUS）の患者やその家族を対象にした患者会を「aHUS kids Japan」として平成２８年７月１日に設立致しました。
aHUS は希少疾患であり同じ病気の患者さんと出会う事が少ないため、 病気についての正しい情報を得たり、患者同士の交流の場を設ける事が必要だと思いスタートしました。
現在、会員数が少なく数家族とアットホームな会となっています。活動内容は年１回の総会・患者会での病気に関する勉強会、交流会です。今後は会員向けのホームページにて情報の共有なども考えています。
お問合せは下記のメールアドレスに、お名前・会員希望またはお問合せ内容をお知らせ下さい。会員ご希望の方には会則をお送りします。
ahus.k.jp@gmail.com
aHUS kids Japan Chairman Mihoko Tomori
aHUS kids Japan 会長 友利 美保子
Notice of aHUS kids Japan Patients Association Established
This time, we have established a patient meeting that aimed at the patients and their families of children with atypical hemolytic uremic syndrome (aHUS) to “aHUS kids Japan” and to 2016 on July 1.
Because it is small aHUS is to meet the patient’s is a rare disease the same disease, or to obtain the correct information about the disease, we started I think that it is necessary to provide a forum for exchange of patient with each other.
Now the number family and at home Kai small number of members. Activities include study sessions on the disease in the General Assembly-patient meetings once a year, it is the exchange meeting. The future is also considered, such as sharing of information in for members of the home page.
Contact the email address below, please provide us with the names, members hope or inquiry. Towards the members hope will send the Constitution.
ahus.k.jp@gmail.com
aHUS kids Japan chairman Mihoko Tomori
More information
「aHUS Kids Japan」は、2016年7月1日に発足した新しい患者会です。数家族ではじまった会ですが、大きな目標に向かって活動しています。
質問１．会の発足、歴史、形態、ゴール、将来像
主治医が主催した3回の交流会を経て、このたび患者主導の会となりました。過去の交流会では患者と家族の勉強会、情報交換会、チャイルド・ライフ・スペシャリストによるアクティビティを行ってきました。現在は会長を中心にメールで情報共有していますが、近いうちにホームページも作成する計画です。これからどんどん活発に活動し、国内外の患者さんたちと様々な形で交流がもてたらと思っています。
質問２．あなたの国（日本）のaHUS患者さんたちはどんなことに困っていますか？
一つはエクリズマブの投与のために2週間に1回の通院のために子どもは学校を、親は仕事を休まなければならないことです。
二つ目は病気に関する知識を得にくいということです。どれくらい患者さんがいるのか、エクリズマブをやめた時にどうなるのかなど、非常に情報が不足しています。何かに特別困っているというよりはそもそも情報が少ないことに困っています。
それ以外にも、患者数が少ない病気なので周囲に理解されにくいことで困っていたり、妊娠、出産、手術などで病気が再発しないかどうかの不安や、将来に対する漠然とした不安があります。
質問３．エクリズマブ、腎移植を含めて日本ではどんな医療が受けられますか？
日本では補体関連遺伝子異常や抗体産生によるaHUSに対する治療はヨーロッパ、アメリカやカナダと同様です。日本腎臓学会では2016年に診療ガイドラインを作成しました。その内容はヨーロッパやアメリカのガイドラインと同じです。エクリズマブは2014年にaHUSに対する使用が承認され、すべての患者に使用することができるようになりました。血漿療法も可能です。小児慢性特定疾患や難病認定のシステムによりエクリズマブを含む医療費は小児でも成人でもまかなわれています。
質問４．その他、aHUSについて知りたいこと。どんな研究がなされているのか、どんな人の話を聞いてみたいかなどはありますか？
エクリズマブについて、長く使っていて薬の効果がなくなってしまうことはないのか、または中和抗体ができることはないのか、投与間隔の延長や注射や飲み薬への変更の可能性はあるのかを知りたいです。
病気や薬の研究をしている人や、長く治療を受けている人の話を聞いてみたいです。
家族内に同じ遺伝子異常を持つものがいるので、同じ遺伝子異常をもつ人がどれくらいの割合で病気を発症するのかについても知りたいです。
最後に
日本の小児患者さんたちは定期通院の必要があること以外は他の子どもたちと同じように生活できています。発症して数か月後には学校の体育を病気になる前と同じようにできるようになり、運動会では応援団長をやったりアクティブに過ごしています。
「aHUS Kids Japan」は数家族のみで構成される小さな会で、発足して間もないですが、どの患者さんのご家族も勉強熱心で新しい情報を常に知りたがっています。同じ病気で悩んでいる方々と国内外を問わず積極的に交流し、情報交換していきたいと考えています。
” AHUS Kids Japan ” is 2016 years 7 May 1 is a new patients’ association, which was established in the days. This meeting, which began in a few families, but working toward the big goal.
Question 1. How did the group form ? What is its history,structure, goal, future?
Attending physician was organized 3 through the times of the exchange meeting, became a meeting of this every time a patient-led. Study sessions in the past of the alternating current patient in the meetings and family, information exchange meetings, we went the activity by the child-life specialist. Currently we share information by e-mail around the president, but plans to create website in the near future. I believe Once now working in more and more active, Mote exchanges at home and abroad of patients us and the various forms.
What are problems faced by Japanese patients?
One is for the administration of eculizumab 2 in week 1 the child is school for the times of the visit, the parent is that you must rest the work.
The second is that it is difficult to obtain the knowledge about the disease. How much whether there are patients, such as what happens when you quit the eculizumab, very information is missing. To begin with information rather than in trouble special to something we in trouble to be less.
Besides this, or have trouble with that difficult to understand around because the number of patients is small illness, pregnancy, childbirth, anxiety and whether surgery is sick, such as not relapse, there is a vague anxiety about the future.
What is the treatment for aHUS in Japan. Eculizumab, or you can receive any medical care in Japan, including the kidney transplant?
In Japan, by complement-related gene abnormalities and antibody production aHUS treatment for Europe, it is the same as the United States and Canada. In Japan Society of Nephrology 2016 it has created a clinical practice guidelines in years. Its content is the same as the European and American guidelines. Eculizumab 2014 to year aHUS is approved for use against, it can now be used in all patients. Plasma therapy is also available. Medical expenses, including eculizumab by the system of pediatric chronic specific diseases and incurable diseases certification has been financed also by adults in children.
What more do you want to know about aHUS? What kind of research has been done, Do you have and whether you want to hear the story of what kind of person?
For eculizumab, what it is not that there would be no effect of the medicine you’re using long, or whether the neutralizing antibody will not be able to, I want to know whether there is a possibility of changes to the extension and the injection and drink drug dosing interval is.
Or a person with a research of disease and medicine, I would like to hear the story of the people who are receiving long treatment.
Because there is one with the same genetic abnormality in the family, I want to know also about how people with the same genetic abnormality is to develop the disease at a rate of how much.
Finally
Pediatric patients who of Japan, except that there is a need for regular hospital visits Are you living in the same way as other children. A few months later with the onset will be able to in the same way as before to become a physical education school to disease, in the sports day you spend in active or doing cheerleader.
” AHUS Kids Japan ” is a small meeting consisting of only a few family, shortly after you, but its inception, also enthusiastic and wants to know always new information study which patient’s family. The same disease in actively exchanges regardless of the people home and abroad to suffer, we would like to exchange information.
Message from aHUS Kids Japan
With the members of pediatric aHUS patients and their parents in Japan, we established patients’ association “aHUS Kids Japan” on July 1st, 2016. It is a great delight to join aHUS Alliance!
Because aHUS is a rare disease and we have slight chance to meet other patients, our association can be a great help to communicate with other patients and families with aHUS. Also our purpose is to obtain proper and latest knowledge of our disease.
We are just standing on the start line together hand in hand.
A twelve years old girl drew this picture. This picture has a message that a butterfly takes wing and go to anywhere it wants. The girl who drew this picture is one of our members. She imagines a butterfly emerges from a chrysalis and she see herself in it.
