SensUs Personal Stories: Wendy
SensUs 2019 challenges teams of students to develop biosensors for the detection of adalimumab, an important drug for patients with rheumatoid arthritis (RA). RA is a disease that can strike already at very young age. Wendy got diagnosed with RA before her 18th birthday and tells her story here.
My name is Wendy, I am twenty-four years old and I am currently a PhD student at Eindhoven University of Technology. When I was fourteen years old, I started to suffer from symptoms indicative of RA. However, the doctors did not diagnose me with RA because they did not believe it was possible to have the disease at such a young age. Two years later, the doctors discovered that I had a damaged hip and confirmed that I indeed had RA.
RA is a chronic inflammatory disease that causes inflammations in the joints, which slowly leads to destruction of the cartilage and damaged joints. The disease causes pain in my joints, mainly in my hip and elbows and it also makes me easily tired. Due to my damaged hip and the irreversible destruction of the cartilage, I had to undergo a hip replacement two years ago.
People are often surprised when they find out I have RA. It is an invisible illness and people don’t expect me to have RA because of my age. When I just discovered I had RA, I went up to my PE teacher at high school to tell him that I was not able to join his gym lessons anymore. He was completely surprised and, just like the doctors that examined me when I was fourteen, he did not believe I could suffer from such a disease at my age. Another somewhat funny example is when elderly enter the train and expect me to stand up for them. I often get weird looks when I keep a seat occupied instead of standing up, but they obviously cannot know that my joints are maybe even in a worse state than theirs. The fact that RA is an invisible illness is for me both the best and the worst thing about having the disease. When I am having a good day, I can pretend that nothing is wrong and do anything I want to do. However, when I am having a bad day, people will not immediately see that I could use some help.
“I think the best and also the worst thing about having arthritis is that it is an invisible illness.”
The disease is very unpredictable, some days are really good, others are not. In general, I can do almost anything I want to do, but I definitely need to do things at my own pace. For instance, it is not possible for me to work 40 hours at the office, so I try to work at home a couple of days. With adjustments here and there, I try to get through the day like anyone else.
“Unfortunately, arthritis cannot be cured (yet), but with the current drugs I can reduce the pain and inflammations and I am able to do whatever I want to do.”
A short while ago, I started using adalimumab because I reacted badly on other medications. Now, I need to inject myself with adalimumab once every two weeks. The treatment with adalimumab has been effective until now and I have not experienced any side effects as I did with the previous treatments.
The main problem with drugs such as adalimumab is that people can experience a lot of side effects and it takes a long time to figure out whether it is effective or not. I am stable now, but last year I had to go to the hospital every six weeks to check if I was responding to the treatment. These periodic check-ups are time consuming, since my hospital is in Groningen, a city at the other side of the country. Therefore, I think that a biosensor could have been a good addition to my treatment, as this device could tell me if the drug dosage is optimal and indicate if the inflammations are indeed controlled or not.
“A biosensor could be a good addition to my treatment, as this device tells me if the drug dosage is optimal and indicate if the inflammation is indeed controlled or not.”
Besides my job as a PhD student, I am the chair of Youth-R-Well. Youth-R-Well is an organization for young adults with arthritis between 16 and 30 years old. They organize activities and provide information on how to live with the disease. Being a part of Youth-R-Well has made me realize that there are a lot of cool young people with arthritis who can help each other in accepting the disease.