"I become a stone": scleroderma and how to live with it

"I notice how my fingers, my ankles, legs or arms become very stiff. And worst of all, I know that it is an irreversible process, that the tissues of my skin are gradually hardening as if i was turning into stone"he says Soledad Pérez to The Confidential.

This 55-year-old woman who lives in a town in Guadalajara has scleroderma, an autoimmune rheumatic disease that affects your dermis and other organs of the body. its immune system causes inflammation and other abnormalities when activated and mistakenly attack healthy tissues of the organism itself causing an alteration of the collagen. "Many tell me that I have a very smooth face for my age, but the reality is different. My face is stretched because this condition It has hardened my features"he says.

The main effect of scleroderma is the thickening and hardening of the skin and inflammation and scarring of many parts of the body that cause problems in the lungs, kidneys, heart, digestive system and other areas (depending on whether it is systemic or localized). There is no cure yet, although there are a number of effective treatments for some forms of the disease.

Live with the disease

The prevalence of this disease is estimated at 250-300 people affected per million inhabitants and although it is a rare condition, the women, around four for each man, they are the ones that suffer the most, mainly among the 40 and 60 years. "Its causes are unknown, but it is believed that a genetic alteration may predispose the disease in a person exposed to certain environmental factors," he says. Blanca García Magallón, from the Rheumatology Unit Hospital San Jorge de Huesca.

I have been for 5 years and things are getting worse, but since there is no adequate treatment, the symptoms do not improve. I almost always have a fever

"Sometimes I don't even know how I feel. My day to day is horrible. I feel bad all the time, my whole body hurts and it leaves me wanting nothing. I need help for everything. My husband has to help me get up every day because i can't alone. I have a hard time planting my feet on the ground because of the stiffness and my hands are very swollen, "explains Soledad.

"I feel as if they pulled my muscles all the time, as if I had a constant needle. I am tired all the time. I try to do things at home and have a normal life, but in the end I am vegetating all day because of the pain. If someone touched me I would realize that my skin is not normal, it's very hard and you could hardly throw a simple pinch. Although my whole body is like this, where I can tell the most is in the arms and hands. Sometimes I can't take some objects. I fall. Y my ankles don't even look at me", keep going.

A lot of rigidity

This alcarreña suffers systemic scleroderma, which It also affects your organs. It is important to note that each case must be individualized since not all patients are going to have the same organic involvement or with the same severity. "Within this classification of the disease there are two types: limited, in which the process is slow and diffuse, hardening progresses faster in parallel in several areas," he says. Naomi Garrido Dagger, rheumatologist and member of Top Doctors to El Confidencial.

Symptoms will depend on the organ or system affected. So, after the skin, the most frequent affectation is that of the digestive system, mainly with esophageal problems (difficulty swallowing, reflux or burning) and bowel motility in the form of diarrhea or constipation. "I have a hard time opening my mouth, the jaw is very rigid and sometimes I get saliva. It's very sad, "he confesses.

The prevalence of this disease is estimated at 250-300 people affected per million inhabitants and affects more women between 40 and 60

Further, the cardiorespiratory system can be severely affected, so appointments should be requested periodically for early detection. The symptoms it can produce are shortness of breath, dry cough, palpitations, chest pain … "Every so often I have pneumonia and, on many occasions, I find it hard to breathe. It's a disease that doesn't let me do anything, "he says.

Disabling

At the cutaneous level, one of the first visible changes is Raynaud's syndrome, a condition that Soledad also suffers and that consists in the temporary interruption of blood flow in the extremities, usually caused by cold or stress. "My hands, feet, ears or mouth become whitish. Then they turn to a cerulean blue and even red. They run out of blood circulation and I have to resort to hot water for a few minutes until I recover the heat and color in my hands and feet, and these return to normal, "he says.

You should be careful with some medications for blood pressure and migraine, as they may be incompatible with Raynaud's phenomenon

"The patient must take care of the skin protecting it from the sun and hydrating it adequately in addition to monitoring the possible occurrence of ulcers or wounds. And above all, there is no drastic thermal change. Other measure priority is quitting smoking, since smoking aggravates the disease significantly, "says Garrido Puñal."I've been five years and things are getting worse, But as there is no adequate treatment, the symptoms do not improve. I almost always have a few tenths of fever and I use the little strength I have left to be relaxed, "says the sick woman.

"It is important to take care of relationships with the couple, friends and family and explain to them what happens to us and how they can help us. In addition to relying on the people around us, adapted gentle exercise, maintaining other pleasant activities, manage energy throughout the day by taking adequate breaks and maintaining good sleep hygiene, it can improve the well-being of people with scleroderma, "concludes the expert. If you have any further questions, you can contact the Spanish Association of Scleroderma so that solve them.

How to treat it

According to the Spanish Rheumatology Society, the first thing you should do is go to your doctor so that they can classify and make a prognosis of the disease. The first of the advice they give in this institution is give up smoking. Tobacco causes a contraction of the arteries that carry blood to the fingers, and therefore Raynaud's phenomenon worsens greatly. People with scleroderma who smoke are much more likely to have hand ulcers, which are one of the most painful complications in the disease.

In addition, tobacco damages the lungs and can worsen the lung involvement that some patients have. It is also advisable Avoid situations of stress and anxiety. Many patients with this disease report that their symptoms get worse when they suffer from this type of condition. As with all chronic conditions, being relaxed helps you feel better.

The skin should be taken care of properly. its hygiene and hydration It is essential for dryness and hardening of it. We also have to Exercise the affected areas. It is necessary to perform physical exercise to stay as agile and as possible. All patients should train based on the type of complications they present. It is advisable to use the affected areas (hands, feet, knees, ankles …) to avoid muscle atrophy, joint stiffness and especially joint contractures. "You have to have a healthy diet and maintain a balanced weight. It is vitally important not to be overweight," says the doctor.

I have a hard time opening my mouth, my jaw is very rigid and sometimes I get saliva. It is very sad to live like this

"Oral hygiene It is also very important. You have to be very careful because these patients are more easily able to have tooth decay. And be very careful when swallowing, chew food well because there is usually trouble eating food", keep going.

You must have watch out for some medications for blood pressure and migraine, as they may be incompatible with Raynaud's phenomenon. Controlling the indicated treatment is key so that the rheumatologist can carry out a study correctly. Perform analytical controls to see and prevent possible side effects. "In about two / three years we may have specific medications for this disease There are several clinical trials with promising results for these patients, "concludes the rheumatologist.

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