How the rare disease Scleroderma brought the Bruggeman family together
Your life as a student should be the best time of your life. For Nurjanah (42) it went differently than for her fellow students. Her health went downhill rapidly. She went from a sporty young woman to someone who no longer had the energy to do simple, everyday tasks. It was her mother who insisted on a hospital appointment. Not much later the diagnosis followed: The rare autoimmune disease scleroderma. The doctors also discovered she suffered from a lung disease, pulmonary fibrosis. But she pulled through, supported by the strong bond with her parents Lineke (69) and Jan (74) and her husband Robin (49), with whom she fell in love while in hospital.
Nurjanah was adopted from Indonesia. After she was diagnosed, she wanted to do something meaningful for others with the same clinical condition. She realized that even less was known about scleroderma and its treatment in a country like Indonesia. As a European representative, Nurjanah has been committed to raising awareness about scleroderma through the foundation Yayasan Scleroderma Indonesia since 2016. She helps with information, fundraising and bringing doctors in contact in The Netherlands and Indonesia. In the nine years since Nurjanah got involved in various foundations in Indonesia, a beautiful development has taken place. The treatment for scleroderma is now the same as here in the Netherlands and fellow sufferers can find and support each other through the foundation.
What were the first signs of scleroderma?
Nurjanah: I was 22 when I started having vague symptoms. It started with a flu-like feeling, I got thick fingers, my skin got hard and I had a constant fever. I lived with my parents at the time, as I was in between studies. I very much enjoyed that period but I kept the symptoms hidden, as I hoped it would go away by itself.
Lineke: As a parent, you are the one who knows your child best, and even though Nurjanah tried to hide it, I knew something was wrong. Her face was swollen, her fingers had turned black and her whole body was covered in edema. She always had always been a fanatic runner, but suddenly she couldn't go for 100 meters without running out of breath. That's when I knew something wasn't right.
Jan: Nurjanah was very sporty, but suddenly she needed a bike to get from the bus to work. Even though she used to be fine just walking.
Lineke: That was the last straw. We had a good conversation with her and we called a doctor to make an appointment at the hospital. At first, the doctor didn't take us serious and only wanted to schedule an appointment after we insisted. He said she could be admitted in 3 months. My gut said this could not wait. I immediately contacted the hospital. She was admitted in less than a week.
"I noticed that Nurjanah’s fingers turned black in the cold"
Nurjanah: I didn’t talk about it until my parents confronted me, but the people around knew something was up. So did Robin, who I worked with at the time. I was temping at the IB Group before going back to study. I was at home due to my symptoms. One day he sent me an email asking how I was doing, and that's where it started. Our first date was in the hospital and after that he never left.
Robin: We were friendly as colleagues and sometimes we took a walk during breaks. I had noticed Nurjanah’s fingers turning black in the cold. Soon after our first email contact she called me to say that she was in hospital. I visited her there and that's where the spark between us ignited.
Nurjanah: There was a very strong attraction between us. Even though I didn't know him very well yet, it felt safe and I could tell Robin everything. That, as well as keeping a sense of humour, helped me get through that difficult period.
Robin: At the time of the diagnosis, Nurjanah was in hospital. When she went home for the weekends, we tried to compensate her misery with nice things. When I think back to that hospital period, I think about how we made each other laugh. The medication made Nurjanah very hungry. We solved that by enjoying our meals more than usual: we went out for dinner every day or we had something delivered.
Lineke: She blossomed when Robin was around. In the beginning Robin lived with us, that was wonderful for all of us. That Robin and Nurjanah went to live together a few months after the diagnosis took some getting used to and was exciting, but it did her a lot of good.
Scleroderma: a long way to the diagnosis
After 6 months of research, Nurjanah was diagnosed with scleroderma. Scleroderma is a rare autoimmune disease, where the immune system attacks healthy cells in your body. It causes thickening and hardening of the skin, but it can also affect organs such as the heart, kidneys and, in the case of Nurjanah, the lungs. This condition is called pulmonary fibrosis. It turns tissue in the lungs into scar tissue. Anyone can get scleroderma, but it it’s mostly women between 30 and 50 years old who suffer from it.
What if your mother hadn't sounded the alarm?
Nurjanah: If I hadn't lived at my parents' home at the time, things could have turned out very differently. We got to it early because my mother stood her ground with the doctor and the hospital.
Jan: Something going on with your children is the worst thing that can happen to you. When I saw that my daughter, as a sporty young woman, couldn't make it to the end of the street, I broke. It still hurts me that we couldn't be present at the appointment where she got the bad news.
Lineke: Luckily, Robin was there. After the diagnosis, the four of us went home and Robin never left.
Jan: He knew exactly what she needed at that time. This could be some sweet self-written notes/tickets on one occasion, and an inflatable punch bag on another. He was always looking for solutions.
Nurjanah: The bond in our family is unconditional, and it only gets stronger. Two years of medications isn’t easy and I felt so bad and powerless. I really needed my parents and Robin. I needed them for support, but also for unsolicited help with practical things: the simple gestures of my parents like vacuuming or cooking food, which also spared Robin. I am still very grateful to them for that.
Less physical strength, more mental strength
Nurjanah: Of course some days are easier than others, but fortunately I only have one check-up a year. I still haven't quite processed what happened yet, but I have accepted it. The hardest part is that I'm always tired - you never get up rested.
"Right now she applies her energies to many other things”
Lineke: My daughter was a very strong person. And although now less so physically, she still is mentally. She applies her energies to many other things, like singing and the commitment to a foundation for more awareness about scleroderma in Indonesia.
Nurjanah: My father was a technical teaching assistant at a secondary school. Through him I came into contact with a singing teacher. Now, I sing a lot. Not only because I like it and can put my soul in it, but I also use it to train my lungs. In addition, I am committed to creating awareness for scleroderma in Indonesia. For me that is a way to find and add meaning.