One in three people with the disease had to miss work for more than a month.
Adelyn Pagán, founder of Hidradenitis Suppurativa Golondrinos and Lic. Janice Marrero Irizarry, Head of Career and Transition Services, and Rehabilitation Consultant. Images: Provided by specialists to the Journal of Medicine and Public Health.
The skin condition, which causes painful, acne-like bumps, doesn’t just physically affect your skin patientwho shows difficulties in Perform your daily activitiesRather, it also affects their work and educational performance, their self-esteem and emotional stability.
However, for patients whose chronic illness causes a significant limitation of their activities or a disability, they can turn to the law to protect their rights.
according to Lc. Janis Marrero IrisariAnd Head of Professional and Transitional Servicess Rehabilitation ConsultantIt is very common for situations to arise in companies that do not guarantee the rights of patients with such restrictions. “Many times people They are afraid and are silent because they may be expelled if they ask for reasonable accommodation. Sometimes they are subjected to violations and do not claim their rights.”
BSCwho also cites federal law, American with a disability (ADA), Rehabilitation ActAnd Section 504 and Persons with Disabilities Education Act (idea) that protects persons with disabilities in work and educationsure to determine that the patient has hidradenitis not necessarily a Person People with disabilities, because it does not depend on the condition itself, but on the limitations that this condition brings.
In this regard, he said that “there may be five People with the same condition, but by definition, only one qualifies for coverage under the law. That is why it is important that a person knows himself and can recognize the limitations he has, in addition to having medical evidence.
for this part, Adelyn PaganAnd Founder of hidradenitis suppurativa . Golondrinosan organization that supports patients with the disease, stated that “it is a chronic, untreatable condition that somehow disables a person. At first glance, you seem to have no disease, which is why employers sometimes don’t even notice people’s suffering at work.”
Alternatively, there are reasonable accommodations that patients can request for Work or educational environmentmany of them: anytime access to the bathroom, time for medical appointments, flexible work, reduced working hours, Time and place for medicine And change clothes. And specifically in the school environment, it is advisable to enroll in the special education method.
The methods of requesting it differ in each field. In the workplace, a person can order a Meeting with the direct supervisordiscuss the Need reasonable accommodation And to provide medical support, while you are in education, you can go to the Students with Disabilities office, ask for a meeting with the principals and counselors and in the same way provide medical evidence.
“My daughter has hidradenitis, in general it affects her life and studies, many times the abscess and the spots at any time burst,” Pagan said.
About half of the patients hidradenitis They should take time off from work sometime during the year due to their illness, so in case they don’t get a positive answer for a reasonable change or all the resources are exhausted, Bachelor. Marrero emphasizes that “people can file a complaint with the Equal Employment Opportunity Commission, EEOC.”
Hidradenitis in Puerto Rico
Alma Cruz, Assistant Professor, Department of Dermatology at the Campus of Medical Sciences (RCM), this condition in which the patient presents with inflammatory nodules, abscesses and drainage fistulas, can be confused with other conditions such as folliculitis, carbuncles, cysts, deep fungal acne, acne conglobata and venereal diseases.
It has been reported that up to 80% of HS patients are obese. Whether due to mechanical factors of friction, traction, or compression, obesity promotes local irritation, sweat retention, and follicular hyperkeratosis, leading to the pro-inflammatory state observed in these subjects increasing the severity of the condition. He notes that weight loss is associated with partial improvement in some cases.
Likewise, cigarette use is mentioned as “another factor directly associated with disease onset and has been described in up to 90% of cases”. Cigarette toxins are responsible for promoting the development of inflammatory toxins, stimulating and maintaining chemotaxis for neutrophils and increasing the virulence of Staphylococcus aureus, and thus the persistence of inflammatory processes. Despite these findings, it was not possible to confirm that smoking cessation has a significant effect on disease control.”
Dr. Cruz also reveals that “about 40 percent of cases of HS have a familial genetic predisposition, with a pattern indicating autosomal dominant inheritance with incomplete penetrance.”
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