Welcome

While working in primary healthcare, I began developing health problems in 2016. I lost my appetite and consequently lost a great deal of weight. Joint problems quickly followed. I subsequently noticed that I bruised more easily, developed small wounds more frequently and that they healed poorly. Above all, I became extremely tired. At one point, the fatigue became so severe that, during a conversation with a patient, I could barely keep my eyes open.

That same day, I took a laboratory request form from the cupboard, ticked off several tests and asked a colleague to take a blood sample from me.

A few days later, I received the results. I was utterly and visibly shocked when I learned that my liver values were severely abnormal. A colleague referred me to an internist.

After numerous examinations, I was diagnosed with autoimmune hepatitis (AIH) in 2018. After a long period of symptoms and uncertainty, the diagnosis finally provided an explanation.

AIH is a chronic liver disease in which the immune system attacks the liver, causing damage that can eventually prevent the liver from functioning properly or, in severe cases, from functioning at all. By the time I was diagnosed, my liver was already severely damaged and I had developed liver cirrhosis. I immediately started taking high doses of prescribed medication, which came with unpleasant side effects.

At one point, my liver was so severely damaged that I was advised to be placed on the transplant waiting list. This was extremely confronting and frightening.

Changing my lifestyle, diet and daily habits became a necessity.

By making conscious decisions and working closely with my medical team, I managed to stabilise my health. As a result, I’m still living with my own liver today. That is something I’m incredibly grateful for and proud of.

Now, several years later, my life has changed dramatically as a result of my condition. Coping with fatigue, taking daily medication, having a weakened immune system, attending regular hospital visits, being admitted to hospital and adjusting my diet have all become part of my life.

Accepting my chronic condition has not always been easy. For years, I felt ashamed to tell other people that I was ill. I was afraid of being pitied or misunderstood, which prevented me from being open about my situation. I didn’t want to be seen as weak or different, so I kept my illness hidden from many people.

On the outside, there was also nothing to show that I was ill.

Over time, I began to realise that acknowledging and sharing information about my illness are not signs of weakness. On the contrary, they can be a source of strength and an important part of self-acceptance. Slowly, I began to share my story, which eventually led me to the point where I now feel able to speak openly about it. That confidence gave birth to this platform (toliveher).

My condition also greatly increased my interest in nutrition and the influence of nutrients on the body. I realised how essential good nutrition can be when living with a chronic illness and I developed a desire to learn more and gain a deeper understanding of my condition. For that reason, I started a bachelor's degree in Nutrition and Dietetics while working a full time job.

Over the years, I have gained a great deal of scientific knowledge and learnt how to become the best version of myself. It took some time, but I can now say that I have found a good balance between my limitations, my health, and my daily life. This is not just about nutrition, but also about movement, personal care, wellness, and personal development.

I’m proud of the steps I’ve taken. I have learnt that acceptance isn’t the same as giving up. It means learning to live with your circumstances in a way that gives you strength and motivation.

My illness has become part of my story. A story I can now tell with my head held high.

At the same time, I have once again reached an important crossroads in my life. On 9 September 2026, I had a follow-up appointment with my medical team at Erasmus MC. During that conversation, I asked them about my current life expectancy. My doctor from the MDL department at Erasmus MC told me that my life expectancy is estimated at 1–2 years.

My medical team and I immediately came to the conclusion that a liver transplant was urgently required to address this life-threatening situation.

As I’m writing this, my liver function continues to deteriorate.

To prevent my other organs from being affected as well, a liver transplant has now been recommended.

Fortunately, I am still relatively fit and strong. That’s why it’s important to take immediate action, so that I can go through this intensive process in the best possible condition and give myself the best possible chance of recovery.