Intractable diseases are difficult to understand visually, and there are many names of diseases, and the symptoms vary depending on the disease. This time, we conducted a questionnaire from patients with intractable diseases entitled "I want to know about intractable diseases, I want to convey, feelings of patients with intractable diseases". I've gathered a lot of people's thoughts, so I'll introduce some of them.

Crohn's disease patients

As for my illness, there are many times when I suddenly want to go to the bathroom. When I didn't have enough time, I sometimes used the multipurpose toilet. I am not in a wheelchair. I am not wearing a stoma. I never want to go to the bathroom first. I wish I could know that there are people like this.

Myasthenia gravis intractable disease patient

My illness fluctuates in symptoms throughout the day. In addition, it is a disease that is difficult to understand because of its various symptoms, such as double vision, difficulty in riding a bicycle, and weakness in your hands when brushing your teeth or washing your hair. When the symptoms are calm, you can move, so it seems that you are cutting corners, and it can be painful. I want you to know that there are many people with invisible diseases.

Patients with intractable systemic lupus erythematosus

When I feel very tired, my workplace sometimes asks me, "Is there anything you can do about it?" I can't go to the hospital because I don't have a fever or anything like that. After all, when you feel a little sluggish or sick, you have to force yourself to go to work. The pain of immune system disease is difficult to understand and difficult to convey to others.

Patients with Parkinson's disease

At a minimum, the amount of medicine is increasing in order to be able to move the body. Eventually, even if the dose of the medicine is increased, it will no longer work, so I'm worried that a new treatment will come out by then.

Intractable disease patient with idiopathic dilated cardiomyopathy

I have a ventricular assist device. Once a ventricular assist device is installed, the battery will be carried in a bag or rucksack. A cable called a driveline comes out of the bag, but it is connected to the auxiliary artificial heart in the body. When I walk in the city and pass other people, I am quite worried that the cable will get caught. I don't think it's easy to tell the difference, but I would appreciate it if you could remember a little bit that there are people like that.

Incurable patients with idiopathic thrombocytopenic purpura

Because you look the same as a healthy person, you may not be understood when you take time off from work due to sudden illness. It was only after I became ill that I realized that being able to work in good health is not a given. I don't want you to understand everything, but I think you need an opportunity to get to know the help mark first.

• For an overview of each intractable disease, please see the linked "Intractable Disease Information Center".
• For the help mark, please see the linked "Help mark".