『全身性肥満細胞症』を指定難病に登録するためにご協力お願いします! Please cooperate to register an interactive disease !

『全身性肥満細胞症』を指定難病に登録するためにご協力お願いします! Please cooperate to register an interactive disease !

0 人が賛同しました。もう少しで 50,000 人に到達します!
発信者:外村 潮美 宛先:厚生労働省








移植をして治ればいいのですが、全世界から情報を集めても症例がごくわずかです。その中でも私の型であるアグレッシブ型(ASM:Aggressive Systemic Mastocytosis )は、ある論文によると移植した人は全世界で7人いて3人の方が成功したそうです。







My name is Shiomi Tonomura.

I am 19 years old. 

I was diagnosed with an intractable disease when I was a sophomore in high school. 

It is called “Aggressive Systemic Mastocytosis” which is very rare and there is no cure for it in the world.

It is not registered as an incurable disease yet.


I am currently able to receive expensive treatments of Pediatric Chronic Specified Diseases, however it will run out the moment I turn 20 years old.

At the rate, I will obviously need to pay very high medical costs in less than a year.

Therefore, I decided to collect signatures with your help and submit the petition to the Ministry of Health, Labor and Welfare for registering the disease.


Although this disease is described as "obesity", it is not related to obesity which makes you fat. 

The mast cells that grow in the bone marrow can do bad things to the whole body, causing a life-threatening condition called ”anaphylactic shock even though I am not allergic to it, and also causing bone pain due to the presence of other bone lesions throughout the body.

And if I stop taking the medication I'm taking now, I can't turn over alone every day due to anaphylaxis and severe pain throughout my body.


I'm currently taking high doses of steroids and anti-cancer capsules for a long period of time, and even when I'm feeling well, I'm still going into anaphylactic shock once a month, or worse, day after day.

Even with the medication, I can't control my symptoms, so I'm going to have a bone marrow transplant in late August 2020.


I hope to get a transplant and be cured, but there are very few cases even after gathering information from all over the world. Among them, my type of Aggressive Systemic Mastocytosis (ASM), according to one paper, there are seven transplant recipients worldwide and three of them have succeeded.

I strongly believe that bone marrow transplants will be successful and people will get well, but even if they are successful, they will need expensive tests and medication for a while.


I have written several letters to the Ministry of Health, Labour and Welfare asking them to register me as a designated incurable disease, but I have not received a response.

My pediatric chronic will expire on June 7, 2021.

If my disease, Aggressive Systemic Mastocytosis, is registered as a designated incurable disease, not only will I be able to get tested and treated, but it may also help to diagnose people who are suffering from the same symptoms. 

Furthermore, it will lead to the establishment of treatment methods.


I need your "help".

No money, just a signature is enough.


Thank you very much for your cooperation.


0 人が賛同しました。もう少しで 50,000 人に到達します!