translated from Spanish: Systemic sclerosis: a rare, disabling disease that is little talked about

Mexico City.- “Imagine waking up one morning and you notice that your hands are inflamed and numb; In addition, over time, they have lost their normal coloration and the pain does not allow you to do anything,” said Renata, a 40-year-old woman and mother of 2 children, who was recently diagnosed with a little-known disease called systemic sclerosis (ES). He indicated that after many visits with doctors who did not know what his problem was, he eventually came with a rheumatologist, who explained that he experienced the first symptoms of an autoimmune disorder capable of affecting connective tissue. This means that your immune system was mistakenly attacking your body causing chronic inflammation, hardening and thickening, mainly from the skin, due to an abnormal healing process (fibrosis) and collagen buildup[1].
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In this sense, Dr. Jorge Rojas Serrano, specialist in Rheumatology, noted that while systemic sclerosis is a rare disease, it generates a huge social, economic and emotional impact on those who suffer from it and in their family. For this reason, in the context of World Systemic Sclerosis Day to be commemorated on 29 June, he emphasized the need to make visible the reality faced by patients living with this condition, as well as the importance of timely diagnosis and the availability of innovative alternatives that have emerged for treatment in recent years. It is estimated that there are between 10 to 50 cases of ES per million inhabitants in the world, of which 90% develop lung and damage from this universe, 25% develop interstitial lung disease (PPE); which results in airway fibrosis, especially during the three years following diagnosis[2]. “When living with an PPE, you cannot breathe well, there is a cough and chest pain, and these symptoms worsen over time until lung function is lost; in fact, 3 out of 10 patients with systemic sclerosis die from this cause[3],[4]”detailed the expert. Faced with this problem, the search for a treatment that meets the uncovered needs of these patients has become fundamental, therefore, among the therapeutic options that have shown greater safety and efficacy this nintedanib[5], a state-of-the-art antifibrotic developed by Boehringer Ingelheim, which was recently approved by the European Commission for clinical use in patients with PPE caused by ES, and which is changing the way we conceive the disease.

In this regard, the member of the National System of Researchers emphasized that, thanks to these treatments, there can be an impact on slowing and controlling symptoms, however, he recognized that there are aspects in diagnosis and referral that can still be improved. “Although we have made progress in understanding systemic sclerosis, we still have significant challenges to solve. In principle, we must establish networks of multidisciplinary teams of specialists that include rheumatologists, pneumologists, dermatologists, etc. with which we can reduce the diagnostic and referral time, which is conservatively around 12 months. If we want to incur positively in the patient’s life, we must detect it first in time.” He said, in turn, that another challenge to conquer is the uncons knowledge of the causes, signs and symptoms of ES. There is now evidence that some genetic and environmental factors play an important role in their development. For example, silica, a material found in sand and some stones such as quartz or granite, has been observed to be a cause of risk as are certain organic solvents such as benzene. Similarly, he called on the general population to be attentive to initial symptomatic manifestations, such as the Raynaud’s phenomenon, an affectation characterized by the change in color and inflammation, mainly in hands, feet, nose or ears, coupled with the tightness of joint pain and numbness. “In these cases, the recommendation is to go immediately with a rheumatologist or a pneumologist specializing in interstitial diseases, as they will be able to make a specific diagnosis and successively initiate precise treatment.” For his part, Dr. José Waingarten, Medical Manager of Boehringer Ingelheim Mexico, celebrated the recent advances made by systemic sclerosis patients and their families. Since the european Commission’s approval of nintedanib for clinical use of PPE for systemic sclerosis, as well as the partnership developed with the popular actress and comedian, Queen Latifah, who joined as ambassador in 2018 following the loss of her mother, Rita Owens, after years of fighting ES.” We are very proud of these important achievements, since they not only have a positive impact on the quality of life and the uncovered needs of patients, but it allows us to claim them for all those years that have lived in the shadow of this un widespread health condition,” the manager said. Finally, both experts called on the population, because of World Systemic Sclerosis Day, that this disease will no longer be alien and invisible and we can in turn give it the just space it deserves through awareness and knowledge. “People living with systemic sclerosis, their families and caregivers learn to deal with the painful and disabling symptoms it entails; as well as coping with the economic, emotional and labor burden it represents; but what they should never have to get used to is to live in a society that stigmatizes them and goes unnoticed. This day is the perfect opportunity to start a new chapter in which together medical community, government authorities, industry and civil society we give them the place they deserve for justice.”

Boehringer Ingelheim
The development of new and better medicines for humans and animals is the essence of what we do. Our mission is to generate innovative, life-changing therapies. Since its founding in 1885, Boehringer Ingelheim has been independent and family-owned. We have the freedom to pursue our long-term vision, looking to the future to identify the health challenges of the future and focus on those areas of need where we can do the most good.As the world’s leading, research-based pharmaceutical company, daily more than 51,000 employees create value through innovation in our three business areas: Human Pharmaceuticals, Animal Health and Biopharmaceutical Product Manufacturing by Contract. In 2019, Boehringer Ingelheim achieved net sales of 19 billion euros. Our significant investment of nearly 3.5 billion euros in R&D drives innovation, enabling the next generation of life-saving and quality-of-life medicines. We take advantage of more scientific opportunities by relying on the power of partnerships and the diversity of experts across the life sciences community. Working together, we accelerate delivery of the next medical breakthrough that will transform patients’ lives now and generations to come. For more information visit our annual report: http://annualreport.boehringer-ingelheim.com or www.boehringer-ingelheim.com.mx You may be interested:Covid-19 Mexico June 26: 25,779 deaths and 208,392 contagionsClima today June 26: Rains and heat is expected tonight in MexicoRecolect 5 thousand tons of sargasso in Quintana Roo



Original source in Spanish

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