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Sclerodermia, poco conosciuta e diagnosi difficili.

2025-05-26 11:20

Vincenzo

Ricerca e sperimentazione, sclerodermia, sclerosi-sistemica, malattie-rare, associazioni, fesca, gils, ails, assmaf, asmara,

Sclerodermia, poco conosciuta e diagnosi difficili.

Diagnosticata con un ritardo medio di tre anni...

June 29, 2022 World Scleroderma Day.

We nurses, who are not only specialized in care and prevention, are also specialized in health education.
Therefore, we want, in our own small way, to raise awareness among the population and politicians about a chronic disease, not only little known but still too little understood, with diagnosis arriving on average three years late.

Scleroderma (or systemic sclerosis) affects about 25,000 people in Italy, with an annual increase of 1,000 new cases.

Onset occurs between the ages of 45 and 65, with women between 25-55 being most affected, increasing in men, and there are also cases in children and young people.

Scleroderma is an inflammatory, autoimmune disease that leads to excessive production and accumulation of collagen in tissues (a fibrous protein), resulting in hard, thickened, shiny, and less elastic skin (from ancient Greek skleroderma means hard skin).

It can also affect the face, a muscle, with a characteristic red-lilac border, always characterized by the sensation of hard skin. Rare but not excluded that this cascade may target internal organs such as the lungs, heart, kidneys, digestive system.

Scleroderma affects about twenty individuals per million inhabitants per year in Italy. It often begins with Raynaud's phenomenon (also known as the disease of cold hands and purple fingers) which consists of a change in color of the fingertips after exposure to cold, first becoming pale, then cyanotic, and finally red.

The causes are unknown, it is certain that it is not caused by a poor diet or by vaccines, it is probably a mix of genetic and environmental causes (resins, solvents, pesticides, etc).

Diagnosis is clinical, medicine is not yet able to reliably predict the course of the disease.

Therapy, is decided among various specialists, depending on the situation: dermatologist, rheumatologist, gastroenterologist, pulmonologist, cardiologist, etc. There are still no guidelines, but the goal is to block or interrupt the inflammatory cascade
The most commonly used drugs are corticosteroids, biological drugs, and methotrexate.

Most children affected by scleroderma can lead a normal life, sports should be encouraged if there are no medical contraindications, psychological support is desirable and we recommend it also for adults, for any illness or problem that arises in life, Talking about it is always good.

Awareness is important not only for welfare, for fundraising to be sent to researchers (which is very important) but also to promote the exchange of knowledge and experiences among various doctors and specialists, to raise awareness among the population to identify the first signs and consult a doctor for early diagnosis, this applies to all diseases, especially for rare ones it is vital.

Let us remember that scleroderma is diagnosed with an average delay of three years.

Awareness and information are everything and
Lapaginadinursingup in its own small way wants to help raise awareness and spread information for the prevention and health of our people and our children. 

Funds, investments, and awareness are needed.

Here are some nationally and internationally significant associations that deal with scleroderma and rare diseases:

FESCA, GILS, AILS, ASSMAF, AS.MA.RA

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