Living with Lupus: My Journey with an Autoimmune Disease

2023-05-12 06:00:00

“During my teenage years, I had lumps of fat on my wrists. At that time, I thought it was nothing to worry regarding. But, some time later, a rash appeared on the same place, then the skin of my face and my chest were marked by red patches”, remembers Johanna Clouscard, president of l’association Lupus France. She then decided to consult her doctor and was quickly referred to various specialists. At 19, two and a half years following her first symptoms, practitioners told her she had lupus and prescribed her hydroxychloroquine “for life”.

“It is an autoimmune disease, which affects between 60,000 and 70,000 people and concerns, in 90% of cases, women.” Clearly, his immune system is out of order and is attacking his cells. Lupus evolves through phases of relapses, caused by “the sun, stress or fatigue”, and by phases of remission. After receiving her diagnosis, she did not take this pathology seriously. “It was difficult for my parents. Me, I was young, I did not realize that it should not be taken lightly”says the resident of Gaillac, in the Tarn, now 49 years old.

“I felt like someone was burning my face and chest with a blowtorch”

During subsequent consultations, health professionals wanted to determine the cause of her lupus. “Two leads have been put forward: the death of my grandfather or an insect bite that occurred when I was picking fruit during a seasonal job. So far, it is not known whether lupus was triggered by this emotional shock. or by this bite”, confides the patient, who currently works in a grocery store in her village. However, she believes her grandfather’s death is one of the main contributing factors to lupus, a disease that “works a lot with emotions.” “I know that usually three or four days following a death I’m going to have a flare-up”adds Johanna Clouscard.

At 24, she realizes that this evil should not be underestimated. “I understood that it was getting serious when the doctors detected a kidney problem. My kidneys were no longer filtering my blood as they should and were letting everything pass. In addition, I had joint pain in my knees, wrists and elbows. As for the skin damage, I felt like someone was burning my face and chest with a blowtorch. My symptoms were pretty bad.” details the forties.

Pregnancy and lupus: “you have to wait for the green light from a doctor”

During this period of her life, the president of the association began to consider starting a family. But in case of lupus, a pregnancy must be planned and should not begin before a remission dating from six to twelve months. “Waiting for a child can promote the onset of a new outbreak. This disease also increases the risk of miscarriage, pre-eclampsia or fetal growth retardation. So, even if it is delicate, it is necessary to wait for the green light from a doctor. Once my relapses and my state of health stabilized, he gave me his agreement. We had one year with my husband to conceive a child, because I might not stop my treatments at the beyond this period”, explains the Tarnaise with a singsong accent.

After some time, Johanna Clouscard became pregnant. “It was quite quick. My pregnancy was monitored very closely, as I suffered from high blood pressure. After several months, I gave birth to my daughter, who is currently 11 years old. When she was born, she presented with problems of health, which were not related to my lupus, in particular an omphalocele, a lack of closure of the abdominal wall which was located at the level of the liver. I was very worried during his first years of life. That is why I I don’t want to have other children for fear of going through the same thing once more and my health deteriorating.”

“I have to take eleven drugs a day”

In 2018, his blood pressure kept rising, which caused a transient ischemic attack (TIA). “I am stubborn and stubborn. In general, nothing prevents me from going to work, not even the fact of being sick. But at that time, I had to slow down and rest”, specifies the mother, who is always followed by a nephrologist, a rheumatologist and a dermatologist.

For several years, she has led “a normal life” thanks to an adapted but restrictive treatment. “I have to take eleven medications a day. I got used to it but it’s quite heavy. Sometimes I forget them”, says the patient. His dream : “a thigh injection that contains a concentrate of various treatments.”

Despite the various constraints related to lupus, Johanna enjoys life to the full. “I often go for a run. You have to get your body used to moving, it helps to keep your spirits up and to stay positive. The worse you are going to feel, the more lupus will be happy to attack you. is a vicious disease!”

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