Here is the personal story of Emily(*), 14 years old, living with lupus:
Everything started when I was in my second year of secondary school: I had to change school after getting my Christmas school report because of my poor results and the difficulties I had studying. In January, I was sent to another school where I hardly knew anyone; I was really nervous, and very stressed, but also very sad because I had to leave all my friends behind in my old school.
A little later, I started to have joint problems; I lived about 500 metres from my school and some days I couldn’t even go to and from school on foot because I had too much pain, especially in my legs, arms and fingers. They were all swollen. This lasted for a few weeks before we went to see the doctor. Previously I had already been diagnosed with ‘Osgood-Schlatter disease’, a problem with my knees due to growth. The doctor thought that these new probems were due to the same thing and wanted to wait and see. I was given ibuprofen, an anti-inflammatory.
Unfortunately things didn’t improve, I wasn’t sleeping, I could hardly move my fingers, my elbow was swollen, my hands were cold, and so on. We went back to the doctor, who sent us to an orthopedist. He examined me but didn’t know what was wrong straight away. He advised continuing the ibuprofen and asked me to come back and see him a month later.
During that time, I was suffering, and sometimes so much that dad had to carry me upstairs and help me to get dressed because I was no longer strong enough to do it. I was constantly tired, and I couldn’t take part in any of my usual activities, like dancing; it couldn’t go on…
At the next appointment, I told the doctor how bad things were. On that day, my toes happened to be swollen and he could see that there was something else going on. He sent us to a rheumatologist. The first appointment was a huge disappointment for me. The doctor said I was making things up because I didn’t have any friends and didn’t want to go to school... I was really shocked because I was in so much pain and even the doctor didn’t believe me! I was told to take folic acid and vitamin D. She gave my mum a request for ultrasounds, to be done if I had any more swelling.
A little later, after a day when my joints were really hurting, my mum took me to the hospital to get an ultrasound done. The technician could clearly see that I had a lot of fluid in my fingers and thought I might have lupus. We went straight back to the rheumatologist to show the results. She saw me walking really slowly, hanging onto mum’s arm. She came out straight away and told me I was exaggerating! I was really upset because it was hurting so much. She eventually gave us a prescription for blood and urine tests which had to be done that evening. We got the results a few days later and the doctor could see that my ‘ANA’ was positive and that my urine results weren’t good either. She was very worried about the results, and she immediately called a specialist at the University Hospital for an urgent appointment. I saw him at the end of June and I felt much happier with his attitude; he treated me with respect and he listened. Several more tests were carried out (blood tests, kidney ultrasound, …). The doctor also told us that it could take up to a year before we found the right medication for me because it varied with each patient.
After a two week wait, we had to go back for an appointment to get the results of all the tests. Everything was pointing to Systemic Lupus, SLE. I was put on prednisolone, plaquenil and naproxen for times when I had swollen joints. In the beginning, I had to go back every month for a check up and to regulate medication doses in the hope of reducing the amount of prednisolone I was taking. My kidneys had to be checked, my heart, my lungs and my blood pressure; to be sure that everything was stable. Over the following two years, everything remained more or less stable. I was also put on methotrexate (which caused me to lose a lot of hair), as well as folic acid and vitamin D. I now take a lot less prednisolone than in the beginning but I still can’t do without it entirely. I have tried but I still have problems with swollen joints.
I hope that in the future there will be medication which will cure lupus: because of lupus, I have had to change my school orientation three times because I couldn’t cope with my studies. I also really want to have children later and I’m afraid because I already know that my pregnancy would have to be closely monitored and that it wouldn’t be easy.
(*) to preserve confidentiality, we have changed the name and removed location indicators