I was diagnosed with an incurable disease at 28. Here’s how I thrive.

Like all children, I had a lot of energy. Growing up in the north of Japan in the city of Obihiro in Hokkaido, winter sports were my favorite. By the time I was 9 I was experienced in figure skating, speed skating, and skiing. I was a member of track and field club for ten years. Being an ambassador at the Athens Olympics in 2004 was a way to celebrate my love of sport.

Me as a baby and later trying out figure skating. Ultimately, it would be track and field that I would pursue for ten years.

As well as sports, I excelled academically but was never sure what I wanted to do as a job. The world of global business seemed to have infinite possibilities and knowing I wanted to keep improving my English, I enrolled at Akita International University (It is one of the few universities in Japan that teach all its courses in English and is now one of the top 10 universities in Japan).

Those four years were a balancing act between studying and socialising, but I enjoyed every minute. Doing a year of my course abroad, near Frankfurt in Germany, was enriching and proved to me that I wanted to work in an international company.

It was during a year studying abroad in Europe that developed my love for working in a multicultural environment.

After my studies finished, I moved down south to Tokyo. Working for different global manufacturers in various roles across operations, customer service and marketing gave me an appreciation of how business worked. I was learning and gaining more responsibility at work. I had a full social life in a beautiful city. I still had the same doubts as other twenty-somethings but overall, I was feeling positive, invincible even. My life started now.

The diagnosis

I had been feeling unwell for a few weeks. What started as a chill turned into shaking constantly, I was waking up in the middle of the night feeling sick. Even the sight of food on the TV would make me feel ill. I was exhausted and my skin turned yellow (I later learned that I had developed jaundice).

It took ten days after I was hospitalized for the staff to diagnose what was wrong with me. From tests including a liver biopsy, I was told it was likely to be autoimmune hepatitis, a rare but serious condition with no clear cause. My immune system was confusing my liver cells for foreign bodies and attacking them, this was causing all my symptoms. Without intervention, my symptoms would get worse and ultimately, I could be at risk of liver failure.

As a young person, who considered herself healthy and active, my diagnosis was a complete shock. Hearing the doctor explain, I couldn’t help feeling scared and uncertain about the future.

Ten years earlier, at the Athens Olympics, I would never have imagined my life would change so dramatically.

I was prescribed steroids to manage my condition. They work by suppressing your immune system, to stop it attacking the liver, but this also means you are at greater risk of infection. Having my natural defences reduced is particularly worrying now with COVID-19 and I have had to shield myself at home during the emergency declaration.

Then there are the side effects of my medication. These include insomnia, a heightened risk of diabetes, losing some of my hair, joint pain, weakened bones and teeth, acne, breathlessness and palpitations to name the major ones. For the first two years after my diagnosis I took six kinds of medicine to try and balance out the side effects.

While I was figuring out my medication I was also trying to deal with my damaged self-confidence. Following my diagnosis, I had given up doing new things and meeting people. I would consider something like joining a sports club but in the next second remind myself “It’s impossible because I don’t have the stamina and am too ashamed of people seeing me in this way.”

From surviving to thriving — a mindset shift

There were many dark moments in those first two years. I am lucky that today my condition has improved and is manageable. I am a member of a patient group for my disease and I have friends there — everyone wants to know the latest medical treatment and shares the hope of a better life.

Acceptance of my disease also transformed my way of thinking and outlook on life. It provided the clarity to focus on what I wanted to do. I was determined to challenge myself to the limit of my ability and somehow help patients like me.

I wanted to stretch myself with work and decided to change jobs. While looking for a company which empowered its people, I successfully applied for a life sciences company. At that time, I didn’t appreciate the true impact of the industry on patients. I don’t have a medical background but apply my commercial operations skills to coordinate orders across the whole of the Asia Pacific region. I make sure the right bioprocessing technologies are with the customer on time. While my day involves some stress, a lot of time on the phone and responding to emails, I am so proud to do this work as ultimately, we are helping patients.

Here I am with my colleagues Aki Matsuo, Business Operation Director for Cytiva in Japan and Katsura Sakakibara, Japan Customer Service Manager at Cytiva. My daily work challenges me professionally but what keeps me going is knowing we are helping people suffering from illness.

An unexpected connection

My work took on a deeper meaning when I found out that my company, Cytiva, is supporting a major pharmaceutical company to run a clinical trial into autoimmune hepatitis (AIH). The trial is evaluating whether a biologic drug, a monoclonal antibody, can treat people who do not respond to steroids to manage their condition.

I am fortunate that I do not fall into the group of AIH patients who do not respond to steroids, but I know it is the case for around 1 in 10 sufferers in Japan. For these people, their doctors will try different treatments, often through trial and error. Work is interrupted and you spend a lot of time at the hospital. The final option is a liver transplant, but this happens rarely.

If this clinical trial is successful (and it is still early days) it would mean new hope for these patients. AIH is a rare condition so to hear it is being studied gives me great hope that new treatments could be on the way. I still dare to dream about the day I can be cured completely; to go back to feeling free with limitless possibilities.

My company, Cytiva, is providing tools and equipment for the clinical trial. This helps speed up the manufacturing of both clinical trial material and ultimately to make the final drug. This equipment is made in Uppsala, near Stockholm and in Umeå in Northern Sweden. I hope my colleagues read my story and know that they are making a difference. Someone smiling in front of you, on a conference call, somewhere far away in Japan, might be the one who is saved by your work.

In Cytiva, whether you are working with customers, processing orders or managing logistics, everyone plays their part in helping patients.

A diagnosis at 28 gave me new perspective. When I don’t know which path to take, I remember lying on the bed in the hospital when I didn’t know if I was going to be ok or not. Today I would say I am thriving because of my disease and not despite of it. Life is precious and I intend to live it as fully as possible.

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Earlier in the year the Cytiva team produced a short film to tell my story which you can watch here.