Summary

In this interview, our Patient Welfare and Research Liaison, Yurika Asami welcomes Himene Asatsuma, a member of our Foundation and a patient with citrin deficiency. Himene talked about how she gained understanding of the disease from those around her. We also asked Himene about how she found it to draw illustrations for materials for elementary school students, which she had done in collaboration with the Foundation. Finally, she also left a message for children with citrin deficiency.

Interview Transcript (edited for readability)

Yurika: First of all, please give us a brief introduction about yourself.

Himene: My name is Himene Asatsuma. I live in Tokyo and I am 22 years old. I was diagnosed with citrin deficiency when I was 3 months old, and I am enjoying my life as I am in the adaptation/compensatory phase of the disease, while going through trial and error with food every day. The experience I gained from citrin deficiency made me want to become a nurse and I worked as a nurse at a children’s hospital, but now I am taking a break due to my health condition. During this vacation period, I was very happy to be able to have such valuable experiences such as creating illustrations and doing this interview. I decided to do this interview in the hope that through my interview I can inspire everyone across the country and give them something. I am very nervous because this is my first opportunity to do an interview, but I look forward to it.

Yurika: Thank you very much. You don’t need to be nervous at all. Please tell us about any challenges you have faced in living with citrin deficiency.

Himene: As I got older and started new school years everytime, I faced various challenges, such as acquiring friendships and understanding with new people. First of all, regarding food management, from childhood, I had developed a kind of sensor that told me what I wanted to eat and how much I wanted it, so I was free to eat as I wished. My mother told me, “Growing up, you were a finicky eater, and we had a hard time getting you to eat.” She said that I drank 2 liters of milk a day to maintain my weight and blood sugar levels, and that I liked eggs, cheese, and nuts a lot. As I got older, I gradually became more interested in food and could eat a lot of whatever I liked. Among them, I have had unpleasant experiences with sugar and sweet foods that I thought I could “eat” or “wanted” to eat, but I would get sick afterwards. Each time I made a mistake, I learned from it and stored it as new knowledge. Even now, there are times when I can make use of those failures, and there are times when I try again and fail again, but I am enjoying the process.

When I was in elementary and junior high school, I did not disclose to my classmates and friends that I had citrin deficiency at all, so I got a little more food and side dishes during school lunch, and my homeroom teacher often took care of me, so I think I was very fortunate to be in a good environment and school. There were times when I had to eat carbohydrates and sweets, and some days I could manage it, but other times I would eat a lot and get sick when I got home. But I think it was a good learning experience.

In high school, I think there were more obstacles to overcome, not only in terms of food, but also in terms of friendships and communication with friends. When I first told my friends that I was citrin deficient, I was very anxious about whether they would accept me, whether it would destroy the relationship we had built, and whether they would understand that I did not want them to treat me differently. I was also worried that I would not be able to convey my feeling that I did not want to be treated specially. However, my friend responded, “Thank you for talking to me. There are many things that I don’t like, but I am happy because I can eat many other things that I like and enjoy them. You feel the same way, right?” I remember I was very happy and relieved. Even now, I often hang out with that friend, and we have a lot of fun together, going on trips together to find delicious food. When you are in a group of several people, everyone has different tastes in food, so there were times when I couldn’t keep up with the conversation or there was nothing to eat in a restaurant, but I never saw that as a negative thing.

For those that I talked about my condition to for the first time, I asked my friends not to hold back on what they want to eat because of my reservations. So, when we were together, we didn’t have to worry about each other, we ate what we liked, and although they knew that I wouldn’t eat it, they would still talk to me about it, and they looked for restaurants with sweet things that I could eat as well. I think that it was because I confided that we were able to build a very comfortable relationship. In elementary school, I was shy because I didn’t want to do anything different from everyone else, so I came home without drinking any of the milk I had brought with me to school and just made do with the food that was provided at school.

In junior high school, people around me began to know what I liked to eat through the school lunch program, and since we exchanged school luncshes (exchanging side dishes and desserts), it became natural for us to drink milk together after taking a bath. In high school, everyone knew that I drank milk as a matter of course, and they would ask me if I drank milk. And then, “I’m going to drink coffee milk now, but you drink milk, right, Here? I remember that it was a lot of fun.

One of the dreams I had when I was in high school was to become a nurse, and I thought, “What can I do with the experience I have learned through CD? There is a kind of nursing that only I can do.” When I first entered nursing school, I explained about CD using materials and words, but I didn’t have the feeling that they understood me as well as they had in my past experiences. This became very apparent after my practical training began. In the evenings after the training, I would feel dizzy, have difficulty in getting strength in my arms and legs, and have stomach pains. There was a time when I thought about asking the teacher to understand me again, but I felt that they would not understand me because I failed to gain understanding the first time, and I felt like I was asking them to treat me special, and I didn’t want to be treated that way. So I stopped explaining about it. But on the contrary, I was able to tell friends I met at nursing school that I had citrin deficiency, and I was able to build comfortable relationships with many of them, just as I had in high school. As I thought about what I should do during the longer training period, I realized that the materials I had used at the time of admission and the explanation I gave in the past were not enough for them to understand me, and I could not find the materials I needed or was looking for at the time anywhere so I decided to create my own materials. I was asked to give a talk to all the teachers. One of the teachers said, “You did a great job in preparing the material,” and “It was easy to understand and conveyed what you were having trouble with and what you wanted from us.” I was filled with a sense of relief that my efforts to communicate with them were going in the right direction. Later, with the support of Dr. Fujitani, a nutritionist, I was able to share the material at a patients’ meeting, and from there it developed into a picture book called “Watashi no Onaka (My Tummy)”, which was an amazing experience for me and made me really happy. As I got older, there were challenges and hardships, but looking back now, I feel that I am blessed by the people I met and the people who were involved with me. I am very grateful to the many friends who accepted and understood me as I was and helped me change my attitude to positive words and awareness, to Dr. Inui who had been watching over me since my diagnosis, to Dr. Oishi whom I met after he returned from the U.S., and above all to my parents who raised me to be proud of my citrin deficiency, no matter what the situation. I am very grateful to my parents for raising me to be proud of the fact that I have citrin deficiency. I once attacked my mother about my citrin deficiency, which I still regret, but because of that experience, I am now able to think of it as an individuality rather than a disease, and I have come to enjoy my life in the same way that everyone else does. I am now able to think about what I should do to spend my life happily and in the same way that everyone else is doing. I am sure there will be many challenges and things I will have to overcome in the future, but I hope that I can use my experiences to overcome them in my own way and with joy, and that I can share my experiences with you and help others.

Yurika:  Thank you very much. It was a great story with a lot of content. When you were in elementary school, it was difficult to tell people around you, but in junior high and high school you were able to tell people, and now that you are a university student (nursing student), I think you have had quite a bit of trouble gaining understanding. But on the other hand, I was impressed that you were able to make materials by yourself to gain understanding, and I thought that was amazing.

Himene: Thank you very much.

Yurika: I would like to move on to the next question. I would like to ask you a few questions about the symptoms you have experienced in the past and the symptoms you are currently experiencing.

Himene: My mother told me that I had jaundice and low blood sugar when I was an infant, and that I did not gain weight for a while. I think that I started to feel some symptoms that occur when my blood sugar level drops, such as difficulty in getting my arms and legs strong, fatigue, and physical problems caused by too much or too little sugar intake because the amount of sugar I can tolerate varies from day to day.

Yurika: Do you know the ratio of carbohydrates and sugars you are taking now?

Himene: I can eat about 100 grams of rice at a time and a slice of bread or a round loaf or two.

Yurika: I often see carbohydrates and breads on your Instagram page, and I was wondering if you take them consciously or that your body wants them. Or is it both?

Himene: Both?

Yurika: Thank you very much. Is there anything about citrin deficiency that you wish was available or that you wish people around you would understand? I heard earlier that you have done a lot of things to gain understanding, but is there anything else?

Himene: When I tell people that I have citrin deficiency, I was most conscious of the fact that it is not something very special, but just a part of me, and that I am no different from anyone else. Some people often say things like “I feel sorry for you because you can’t eat whatever” or “That’s tough” or “You’re missing out if you can’t eat this and that”. I think you can sympathise to be close to someone with simple words like that, but I don’t really like those words, and I don’t think I have had much of a relationship with those who have responded in that way.

I think this is one of the most common forms of communication that occurs when both the communicator and the receiver are experiencing something for the first time, or when the name of the disease is completely unknown to the other person. The first thing I think I can do as a communicator is to ask myself how I think about my citrin deficiency and how I want the recipient to feel about it, and then find the answers to these questions and gradually communicate them to the recipient.

In any conversation, if you say something negative like “because I am ___,” the recipient will often perceive it in a negative way. I think it is possible to change the recipient’s thoughts and feelings into various forms. The first thing I want to say here is that when you confide in someone, you may be filled with anxiety and nervousness, but I want everyone to remember that it is okay to make mistakes and be wrong. I also think that it would be good if you could make an effort to communicate with others and to have them understand you, and if you can overcome the difficulties together with those who are by your side. I want to tell people that they don’t have to try alone. When I have failed a few times and it didn’t work out, or when I felt “annoyed” from the beginning, I simply cut off the relationship.

Something I would like to try is to drink alcohol just once, and I would like to feel the sensation of wanting to eat rice with other dishes, and I would like to spend a lot of money on sweets.

Yurika: Thank you. So you had that desire. Thank you very much.

Do you feel that your body itself rejects sweet foods, or rather, when something sweet comes onto your tongue, you just feel like you don’t want it?

Himene: I don’t eat much chocolate, but I can eat cheesecake and cream puffs, but I don’t eat gummy bears and other sweets. I often hear people say they paid 1,000 yen for a cake. I also wonder where this feeling of eating ramen and rice as a set comes from, and I would like to experience it.

Yurika: Thank you very much. You mentioned earlier that you think about the condition and what to do with the people around you. Did you mean your parents or a nutritionist? Or do you also include your friends?

Himene: I have often talked to my parents or friends to whom I have confided, so I think it is okay to talk to someone if you feel comfortable doing so. I personally think that it would be good to think about it together and deepen my knowledge with that person.

Yurika: Thank you very much. Next, can you think of anything we at the Citrin Foundation can do in the future for patients with citrin deficiency?

Himene: When I was in nursing school, the materials I needed that focused on how the patients themselves felt, how they live their lives, and what they are doing now didn’t exist and this was my biggest struggle. I think that because it is a disease that is not well known, it is necessary to provide detailed information about it. I think it would be great if there were materials or a website that could provide necessary information to those who are not members of patient associations or Foundations, or those who are planning to join, so that the information they are seeking can be delivered to everyone without omission. It would be nice to have a tool like Instagram or Twitter where anyone can easily post information about minor symptoms or events that occur in daily life, such as how things have improved or what is happening right now and where anyone can easily find the foods and snacks that they like and look at them in their spare time, rather than just listing them on a website with pictures, like looking at a menu.

Yurika: Thank you very much. Do you have any wishes or anything you would like for patients with citrin deficiency in the future? Please let us know if you have any hopes for the development of medications or effective treatments.

Himene: I don’t really wish that my citrin deficiency could be completely cured, but rather that I could continue to enjoy myself and deal with it well. I often hear people say that they have to make peace with their lives, but I think that’s a very sad image. I hope that they can enjoy the process of trying and failing in ways that they find enjoyable. I also hope that I can continue to do so in the future. However, it would be very troublesome if they slip out of the adaptation and compensatory phase, so I think that I must continue to improve my eating habits and lifestyle to prevent that from happening. I sometimes feel that I would be more fulfilled if my fatigue, low blood sugar, and other minor symptoms that I experience in my daily life could be alleviated, so I would like to know if there is any treatment or remedy for the symptoms that abound in my daily life.

Yurika: Thank you. Do you feel that it would be nice to have some kind of drug for something that makes you feel a little sick after eating, for example, sugar or carbohydrates?

Himene: Yes, it would be.

Yurika: Thank you very much. Next, I would like to ask you about the materials for elementary school students that you collaborated with us on before. I would like to ask you when you started drawing pictures. I would also be happy if you could tell us what drawing means to you.

Himene: I actually didn’t have opportunities to draw until I was asked to do an illustration for the Foundation, and I was not very good at drawing so that illustration I did was the first time I drew seriously. Since high school, when I first became interested in the pediatric field, I have thought that picture books are one of the first things children see when they play, so I thought they are one of the most familiar toys.

Yurika: Thank you. It was a very nice illustration.

Himene: Thank you very much.

Yurika: How was it to illustrate the materials you collaborated with us on this project? Did you enjoy it? Or did you find it difficult?

Himene: My best friend from high school drew the pictures for the picture book I created called “My Tummy,” so I was very anxious about whether I could really draw the pictures, but I was hoping that the pictures would have a soft atmospshere that children could relate to, so I tried my best to make them as close to that image as possible. There were times when the picture ended up being different from what I had imagined, but I had a lot of fun every day while I was drawing. I felt a sense of accomplishment when I finished the picture, and when I received feedback after it was released to the public, I was really happy and glad that I had worked so hard on it.

Yurika: Thank you very much. It was really a very nice drawing. Finally, where did you get inspiration for your illustrations?

Himene: I also observed children eating, playing, crying, laughing, etc. on YouTube and at the park, and studied the atmospshere of the children playing in the park so that I could convey that in my drawings. I painted while studying to convey that atmospshere through my drawings.

Yurika: Thank you for doing some research before you started! This is the end of our talk on your illustration. This is the last question, but what is the last message you would like to give to people with citrin deficiency?

Himene: I hope that you will be confident in the fact that you were born with citrin deficiency and that you will live a long life with CD, and I hope that you will make it a happy and joyful moment. I hope that through your relationships with the people you meet, you will grow and make repeated mistakes, and that you will include the medical professionals, people who support you by your side, and people you have come to know through your citrin deficiency in your circle, so that the time you spend living with your citrin deficiency will become a better, more enjoyable, and fulfilling circle. I would like to see the circle of people who support each other and those who have come to know each other through citrin deficiency.

I think that by facing the issues I mentioned earlier alone, you may feel distressed, but by sharing them with your family, your doctor, friends, or anyone you feel comfortable with, you may see a new side of yourself, I would like you to remember that there are always people who are willing to support you and do their best to help you.

Another thing I wish for is for the world to become a place where people of all ages with citrin deficiency and their families can live happily and enjoy their lives. No matter how much the patients themselves or their families accept the fact that they have citrin deficiency and consider it a part of their personality, they may feel hurt or scared depending on the people they get involved with, but I hope that they will choose the people they get involved with to live a happy and joyful life. I hope that people will accept me as I am and understand that there are always people who support me not only in terms of my citrin deficiency but also in terms of my life, and that there are always people who can give me a more fulfilling life and share it with me. I hope that the lives of those who live with and support citrin deficiency will become more colorful.

What I have felt through the patient meetings and the interaction on Instagram is that there are many people who think of having citrin deficiency as a choice between good and bad, and I want them to remember that the answer they come up with in their own way is the most correct one and that it is a choice they should be proud of. I want people to remember that the answer they came up with is the correct one and they should be proud of it. No matter what conclusion you come to, there will always be someone who will support you and cheer you on, so I hope that we can all relax a little more and live our lives with confidence in ourselves.

Yurika: Thank you very much. It was a very nice message. I think that your message is very influential and has a strong message, since many of our registered members are young children who may not yet know how to deal with citrin deficiency.

Himene: Thank you. I would like to say this to the children, but I believe that the little ones will grow up to be bigger and bigger in mind and body, and in the process, when they have to do something different from others or need to be creative in some way, I would like them to tell their father, mother, or doctor if they feel uncomfortable or want to do something the same way as others. If you feel that you have to do something different from other people or that you need to make some adjustments in the process, please do not hold back and talk to the people around you about it. I am sure that they will think together with you and come up with other methods or ways that you can do things together with everyone else. There is absolutely no reason to be embarrassed or feel strange because you are different from your friends, and that is part of your wonderful personality. One day, you will be able to overcome and enjoy yourself, so I hope you will tell the adults around you when you are having trouble. I want you to remember that your father and mother are very happy that you were born with this unique condition called Citrin Deficiency.

Yurika: Thank you very much. I think that there are children in elementary school who may not like to say they have citrin deficiency or may be teased by others for saying they have citrin deficiency and I think it is definitely better to say it than not to say it. But the Foundation would like to do our best so that they will not regret having talked about their condition. I would like to end our talk here today. Thank you very much for your time today.

Himene: Thank you very much.