The Long Road to diagnosis

Like many autoimmune diseases,lupus frequently enough presents subtly,making diagnosis a lengthy and frustrating process. Rivière’s experience is a testament to this diagnostic odyssey.

Rivière recalls early health issues: I have always had small health concerns when I was very young as kidney disorders and hematuria (presence of blood in the urine, editor’s note). But there has never been a diagnosis made, because the exams always came out normal. Despite these early indicators, a definitive diagnosis remained elusive for years.

recurring health problems, including hypertension in her thirties, sun intolerance, and false labor, further complicated the picture. I had very difficult pregnancies with prolonged alitments. During one of my pregnancies, I also had vital joint pain.I had been oriented towards a rheumatologist at that time, but he had not seen anything special Rivière noted, highlighting the challenges in identifying the underlying cause of her ailments.

As Rivière approached her forties, new and debilitating symptoms emerged. I had excess of terrible fatigue, I fell asleep. At the beginning, I put this on the fact that I had night permanence in my job as well as four children, including small she explained. A turning point came when her drug allergies worsened,ultimately ending her career in the healthcare sector. After extensive consultations and examinations, Rivière finally received a lupus diagnosis in 2000, approximately three years after actively seeking answers.

Coming to Terms with Lupus

While a diagnosis can bring a sense of relief, it also marks the beginning of a lifelong journey of managing a chronic illness.

We are not delighted with the diagnosis, but at least there is a name on a state of health Rivière stated, reflecting on the moment she learned she had lupus. Doctors explained that lupus is a systemic autoimmune disease that can affect various organs, including the skin, heart, lungs, kidneys, and eyes. The severity of lupus can vary greatly, ranging from benign to life-threatening.

Rivière, who was 40 years old at the time, also learned that lupus has no cure. It had the merit of being clear. Accepting the disease and adapting to its impact on daily life is an ongoing process. Lupus can cause fatigue,pain,and sensitivity to the sun,which can trigger rashes and flare-ups.

The constant need for medical monitoring can also be burdensome. What I have more and more difficult to bear is all these exams to carry out. It’s not that it is useless, but it weighs down life Rivière admitted. However, she emphasizes the importance of adherence to treatment: You should not give in to fed up the treatments. You have to be able to keep the course,as anyway the disease will remember you at one time or another,or else. During flare-ups, Rivière prioritizes rest, but she also finds strength in reading and her work with the French Association of Lupus and other autoimmune diseases.

Advocacy and Improving Patient Care

Rivière’s personal experiences have fueled her dedication to improving the lives of others living with lupus.

I supported very badly to be dismissed from my professional life. Take care of the association helps me a lot.It allows me to tell myself that I continue to do my job in a different way Rivière explained. As becoming president of the AFL in 2006, she and other volunteers have spearheaded numerous initiatives, including the establishment of a national rare disease network and the creation of a therapeutic education program on lupus. It was innovative, because we where the first to involve patients in its development Rivière noted. More recently, they launched the Aitio Lupus application, which facilitates interaction and support among patients.

This tool addresses two meaningful challenges faced by individuals with rare diseases: feelings of isolation and a sense of not being heard, particularly by healthcare providers. The impression of not being listened to or that their symptoms are minimized is a recurring complaint of the patients Rivière reported.She acknowledges the demands on doctors’ time but stresses the importance of attentive listening: I know that doctors have a lot of patients and work. But listening woudl be a point that should be improved in the management of lupus.

Combating Misconceptions

Rivière is also committed to raising awareness and challenging misconceptions surrounding lupus.

As it is an essentially feminine disease, doctors tend to send to a shrink Rivière lamented. She actively fights against the prejudice that lupus is “all in the head,” drawing parallels to the historical psychiatrization of other female-specific conditions like endometriosis.

Admittedly, talking with a psychologist or psychiatrist can be useful, if only to help live with the disease or assess their mental health, but that is not everything. The lupus is an autoimmune disease, it should not be forgotten. rivière emphasized, underscoring the importance of recognizing the biological basis of the condition.