Patients with neurofibromatosis denounce that they are "increased" for confusing their lesions with monkeypox

• Controversy The man who was warned by a doctor on the subway of his lack of protection against monkeypox denies the doctor: "I suffer from neurofibromatosis"

• Health A doctor's complaint about a man with monkeypox who was traveling near other people on the subway

The

has appealed to the professional community, the media and the Administration to explain the differences between this pathology and monkeypox, since some patients "have been rebuked on the street" before confusion between the skin lesions of both diseases.

Neurofibromatosis

is a chronic, degenerative, incurable genetic disease that can be disabling, caused by an alteration of chromosomes 17 and 22 that causes

in almost the entire body.

The physical, mental, sensory and social complications faced by those affected are multiple and their evolution highly variable, from physical deformities to cancer and even death.

A large part of the patients have

, which are a type of benign tumor with the appearance of "lumps" that can appear in different parts of the body;

be in number, from a few tens to hundreds, and of different sizes.

They are symptoms with a significant aesthetic affectation that can cause a poor self-image, low self-esteem, rejection and social isolation.

"Many of the neurofibromatosis patients have been reprimanded on the street, so we appeal to

to help us not increase the stigmatization they already suffer," said Agustín Campos, president of the AANF.

"The lesions between the two pathologies are clearly different," says Dr. Héctor Salvador, a pediatric oncologist at the Sant Joan de Deu Hospital.

"

(they appear in days) and vesiculopustular (like chickenpox). In very early stages there may be some pustular lesion and there it could perhaps lead to doubts for a person on the street," he explains.

"On the other hand, neurofibromas are lesions of very slow evolution (years). In the initial phase they are flat, violaceous and over time they usually evolve slowly to wart-like lesions of different sizes. Neurofibromas are obviously not contagious lesions, and, unlike monkeypox, it rarely affects palms and soles", details the doctor.

For his part, the dermatologist Francisco Javier García, from the University Clinic of Navarra, has condemned the sharing of a clinical photograph of a person on social networks or in the media, "and even less so if it can be recognised".

On the other hand, he has insisted that there is no similarity between monkeypox lesions and other skin diseases such as neurofibromatosis.

In the latter, the lesions are skin-colored or slightly pigmented.

On the other hand, in the case of monkeypox, an infectious and contagious disease, they start with

and an inflamed area in the contact area of ​​the contagion, which can, in a second phase, spread to other areas.

"Clinically they don't share any similarities," he reiterates.

For his part, Dr. Ignacio Blanco, National Coordinator of the European Network of Reference Centers, recalls that "there are many other diseases that manifest themselves on the skin and that are not contagious or involve carelessness, such as psoriasis."

"The lesions in neurofibromatosis do not appear acutely and, unfortunately, they do not disappear. Patients with neurofibromas live with these lesions and must suffer from the

. And many times they are forced to give explanations about the lesions and what They are not contagious," he lamented.

For this reason, they ask the experts and the Administration to disseminate "clear and concise" information on the clinical manifestations of monkeypox and its difference with other dermatological affections such as neurofibromatosis.

"For many people with neurofibromatosis type 1, the process of accepting the disease is long and difficult. Social pointing can reverse the process, and even more so if it is a false accusation, as is being done with monkeypox," they warn.

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