ANNEMARIE’S STORY

Living with butterflies and wolves

This is the story of me, Annemarie, diagnosed with Subacute Cutaneous Lupus Erythematosus (SCLE) in 1999, being 33 years old. Currently I am a Board Member, and a member of the Patient Advisory Network of Lupus Europe. I am also involved in the Dutch Patient Organisations NVLE.

As from birth I have been very sensitive to sunlight (UVA and UVB). During my childhood and puberty I avoided the sun as much as I could, while being outside playing, cycling and so on.

As an adult I have been working over 40 hours per week in a law firm as legal secretary and later as paralegal. While I enjoyed working I got a lot of problems with joints and tendons throughout my body. With physical therapy and less hours of work it was manageable. Around 30 years of age (1996), I got a very itchy red rash on my neck, which at first was identified as an allergic reaction to a particular substance by the General Practitioner, who referred me to a dermatologist, when the ointment the GP prescribed didn’t improve the rash. The dermatologist tested me for various substances and prescribed a costeroid ointment for the rash.

One year later, more rash like lesions came back, more and on different parts of my body (cheeks, nose and upper body, arms) which didn’t improve while using the ointment only. After a few allergy tests, the dermatologist took a biopsy, to try to identify what was going on in my skin. As a result I was diagnosed at the end of 1999 with SCLE. The treatment was adapted taking medication and using two different ointments (costeroid and hormonal). Also it was strongly advised to avoid UVA and UVB light and using sunscreen every day of the year.

During the following year my joints and tendons also got very painful again, for which the dermatologist referred me to a rheumatologist. After a few months of tests I showed a few criteria for Systemic Lupus, but did not qualify for the diagnosis of SLE. I got a remark in my file next to the SCLE, SLE-like disease. The dry eyes and mouth caused me to get the diagnosis of Secondary Sjogren disease.

My skin improved during a few years, ending up to stop the medication, not the ointments. During these years I was very fatigued, and had to work less than others, finally from over 40 hrs per week to 30 hrs per week.

During these years I could live with the precautions taken to be outside, protecting myself from UV-light, using sunscreen, UV-protective clothing. I started to run, fully covered, and in the summer not fully covered but with sunscreen all over my body. Unfortunately, I got a very bad flare after two years running, in 2011. My dermatologist was happy to see me again, but not looking like this. I was put on the same medication as before but it didn’t stop the flare, it even got worse. During two years various combinations of (off label) drugs were tried and ended op with a mix of two drugs (one of which is off label) and ointments to get the flare under control.

For the SLE-like symptoms (joints and tendons) I got other medication (mainly painkillers and other anti-inflammatory drugs).

During this flare the fatigue was bad and got worse during the treatment of the flare. I also had to stop working and was qualified as unable to work by the governmental body.

In my social and private life a lot has been changed during the years. A lot of (so called) friendships got lost. Friends couldn’t deal with the fact that I cancelled appointments or didn’t attend a special event, as my condition is unpredictable how I feel on various days. When having lesions, people stare at me, asking me if it is not contagious, and if I am totally covered with UV protective clothes people stare at me because I look like being overdressed during sunny days. I usually stay indoors during sunny days between 10 am and 5 pm to avoid any inflammation.

When events take place outside, I need to be mostly in the shadow, to avoid the UVA and UVB. Even when there are clouds I have to be careful, since the UV also comes through the clouds. And with water and ice, I should be also be careful, since the UV reflects on water and ice.

As of 2011 to today, I am working as a volunteer as patient representative for lupus, with a speciality on lupus and the skin. Through Lupus Europe and the NVLE (the Dutch Patient Organisation) I have been and I am very active as patient representative for lupus & Skin. In 2023 I was honoured with the prestigious GlobalSkin Patient Leaders Award.

Since 2023, I am involved as ePAG in ERN-Skin to improve care, information, knowledge for lupus and skin involvement. It’s starting slowly to progress, to have a good collaboration I need to find a dermatologist (or more than one) to work with me on various materials, documents etc. for lupus and skin involvement.

Since 2011, little steps have been taken to raise more awareness for lupus and skin involvement. The last two years have shown that the hard work has proven to work, more and more researchers, dermatologists, rheumatologists are showing interest in skin involvement with lupus.

I hope to collaborate within ERN-Skin with a (few) dermatologist(s) which leads to better care for people with rare skin conditions, as such SCLE, CDLE, ACLE (etc.) and SLE with skin involvement. As such patients with this rare skin condition could have a better, improved life with this chronic disease.