"Sometimes I'm so tired I can't even stand," Sergio's life with scleroderma

Also known as systemic sclerosis, scleroderma is a rare, chronic autoimmune disease that affects 3 in every 10,000 people and, according to the Mayo Clinic , "involves hardening and tightening of the skin. In Spain, it is estimated that around 15,000 people are affected."

Anahy Brandy, spokesperson for the Spanish Rheumatology Society and a specialist in the Rheumatology Department at Cabueñes University Hospital, states that "it is characterized by vascular damage and collagen damage, resulting in fibrosis (hardening) of the skin and affected organs."

The organ most affected by this disease is the skin, although the lungs, heart, and kidneys may also be involved. Vascular involvement also occurs, giving the sufferer's fingers a very distinctive appearance, as they change color, even turning purple.

The expert describes it this way: “The vessels (mainly arteries) harden, and this leads to various symptoms. One of the most well-known and early-onset symptoms is Raynaud's phenomenon. This phenomenon involves changes in color in distal areas, such as the fingers, upon exposure to cold. This phenomenon leads to three phases of color: pallor, cyanosis, and erythema.”

Exhaustion and pain

The change in color, followed by ulcers on his fingertips , were precisely one of the first signs that something was wrong for Sergio Sova , who suffers from scleroderma. “The symptoms began to appear in October 2022. Just a few months later, in January 2023, I was admitted to Puerta de Hierro University Hospital , where I stayed for 10 days. They ran tests on me there until they reached the correct diagnosis.”

He stopped working then. And he hasn't been able to return. He has permanent total disability. In fact, "the ulcers on my fingers appear every time I do any work or exert myself with my hands. Also, the pain in that area, as well as joint pain throughout my body."

Tiredness and feverish feeling

The worst part, Sergio says, is the profound fatigue he feels almost every day , which forces him to spend hours lying in bed: “The exhaustion is so great that I can't even stand up. Add to that the feeling of fever, even when I don't have one, which I find very unpleasant. All of this gets worse in the cold months. Last winter was hell.”

She's been out of work for over two years, but she's still struggling to come to terms with the fact that she's not only lost her job, but also has little to do, even at home. "As soon as I do any manual labor, no matter how small, I get ulcers and joint pain. It can take days or even weeks to recover ."

Emotional affectation

In addition to the hardening of the skin, "which becomes tight, hard, and inflexible and can lead to stiffness in joint mobility," Brandy says, there are also some complications depending on the individual patient's condition. "If it affects the lungs, fibrosis or pulmonary hypertension (high pressure in the pulmonary vessels) can develop, serious complications that may require chronic oxygen therapy."

It is true that to date there is no curative or specific treatment for systemic sclerosis , "although different therapies used in other diseases have demonstrated efficacy in some manifestations of the disease. It is important to keep in mind that each manifestation requires specific monitoring and treatment, and given that there is so much variation in the type and severity of symptoms, it is important that each patient receives individualized care."

All of this also affects the patient emotionally. "Sometimes it causes great anxiety or fear, due to the unpredictable nature of the disease. To help patients, there are patient associations, such as the National Scleroderma Association . They have managed to create a close family, which is essential for patients," concludes the rheumatology specialist.