Lupus, First Person

Last week, it was obvious the news that Selena Gómez canceled his Revival tour because of (anxiety, depression and panic attacks) psychological complications arising from the disease of lupus that suffers. In the article, I talked about systemic lupus erythematosus, a chronic autoimmune disease, no known treatment, in which the patient’s defenses attack healthy tissues and cells. We talked to three patients of lupus and they gave us their view of the illness. Today, we have decided to give them a voice again. To them, those who suffer from lupus every day. Because this disease is still a big unknown, while suffering many more people than we think. And because it affects especially women (approximately 90% of those affected are women).

With whom have we spoken?

First, we went to the author blog of reference in Spain about lupus, your lupus is my lupus. She’s Nuria Zúñiga, who is also Vice President of the Lupus Madrid Association (more info about the Association on its website or Twitter). Nuria clarified us many of the doubts about the disease we had and, in addition, asked us to do an effort to visualize it and normalize it.

Despite being a disease relatively unknown, did not take long to find also other two women who suffer within our work environment. One is Esther Clemente, Direct to the palate, and the other editor is Pamela Rodriguez, exeditora of the same medium and currently responsible for the one blog two.

The three responded to our questions and helped us to better understand the disease and suffer from it who.

How was your diagnosis of lupus?

One of the greatest challenges facing patients with lupus is the difficulty of diagnosis. In the absence of a specific test, the experiences of those first moments are very different in each patient.

Nuria, for example, tells us that diagnosis took nothing more and nothing less than seven years to get. Its first symptoms manifested themselves when he was 7 years old, but until the 14th, when it hit the skin, was not diagnosed. “I was lucky that in those seven years I will not affect any organ. Many patients do not have as much luck». Pamela is Another example of late diagnosis. In his case, he was 9-years-old and had been with symptoms since the 7.

Esther, on the other hand, considered lucky by the precocious diagnosis. In just two weeks from the first symptoms, already knew what happened, in spite of, as says, live in a small town and at a time when lupus was even less known than now.

What is your main symptom?

Also at this point we have found important differences among people that we talk about. Esther tells us that, at this time, the worst symptoms are chronic fatigue and pulmonary complications. She has never suffered the skin redness on the face, typically associated with lupus. However, Nuria that is the main symptom.

In the case of Pamela, malar rashes are also its most obvious symptom, as well as the pain in the joints and, as in the other two cases, the chronic fatigue. In most critical moments, he had lung problems, as also happens to Esther.

Main symptoms of lupus

How has it affected your work?

The three respondents they have affected their professional work by lupus one way or another, having to leave his job, reducing it, or changing its dynamics.

Nuria tells us that, after a period of stress, had a serious outbreak, after which She was forced to leave his job to spend some time to rest and self-care. Now, thanks to the treatment, is precisely in phase of job search.

Esther also affected a part of his professional life for lupus. It is a veterinary and a part of his work involved physical effort, so had to reduce their journey, due to the chronic fatigue and pulmonary complications.

Pamela, also because of the chronic fatigue, He had to adapt his profession to the circumstances of her illness. «As I didn’t want to stop working, I decided to do it from home. «My profession development as if you were in an office, but with the advantage that if I am wrong, I can slow down».

Image of Selena Gomez, starting in 2015, which made alarm bells about his illness, due to swelling of his face.

How you been affected psychologically?

Three people with whom we spoke agree on something: lupus affects psychologically in so far as it limits your life. I.e., as we explained in the previous article, depression and anxiety are not direct Lupus medical consequences, despite the fact that they affect a large percentage of patients.

See limited life who want to lead, having to spend hospitalized periods, always be doctors, not to perform daily activities, living with a disease unknown to many… those are the main psychological implications that speak us Nuria, Pamela and Esther, very similar to that they may be associated with any other chronic disease.

What you know about lupus prior to diagnosis?

The profession of Esther as veterinary medicine was an ally when it comes to knowing what faced. Dogs also suffer from lupus, so it She knew the disease. On the other hand, Pamela confesses that they knew nothing of it and, being a prior to the emergence of internet time, not having many options to find information.

Núria was in the same case. Nor do I know anything about lupus and is precisely this initial ignorance that has led her, years later, to become part of associations of patients and develop a divulgative work through his blog. “I realized that it is much better to get the facts about the disease to take an active role and help our doctors to take care of us. Neither pills nor they can do alone all the work! Why I do what I do and I support the associations of patients through volunteering. His work is very necessary to give voice to the patient and make it possible to have an early diagnosis and access to treatment. Above all, to standardize and to publicize a disease which, today, has many stigmas that only hurt those who live with lupus».