One in three people with this disease has had to be absent from work for more than a month.
Adelyn Pagán, founder of Hidradenitis Suppurativa Golondrinos and Lic. Janice Marrero Irizarry, president of Vocational and Transition Services, and Rehabilitation Counselor. Photos: Provided by specialists to the Journal of Medicine and Public Health.
The skin condition, which causes painful acne-like bumps, not only physically affects the patientwho shows difficulties in the performing your daily activitiesbut also impacts their work and educational performance, their self-esteem and emotional stability.
However, for patients whose chronic illness results in a substantial limitation of their activities or disability, they can take shelter under the law to safeguard their rights.
According to the Lic. Janice Marrero Irizarry, presidenta de Vocational and Transition ServicesY Rehabilitation Counselor, it is very common for situations to arise in companies that do not guarantee the rights of patients with these limitations. “Many times the persons they are afraid and keep quiet because they may be fired if they ask for a reasonable accommodation. Sometimes they suffer abuses and do not assert their rights”.
The Bachelorwho also cites federal law, American with disability (THERE IS), Rehabilitation Act, Section 504 and the Individual with Disability Education Act (IDEA), which protect people with disabilities in the labor and educational areais emphatic in specifying that a patient with Hidradenitis not necessarily a person with disabilities, since it does not depend on the condition itself, but on the limitations that this condition brings with it.
In this regard, he states that “there may be five people with the same condition, but under the definition only one is eligible for coverage under the law. That is why it is important that the person knows himself and can recognize the limitations that he has, in addition to having medical evidence ”.
For its part, Adelyn Pagan, founder of Hidradenitis Suppurativa Golondrinos, an organization that supports patients with the disease, stated that “it is a chronic condition that has no cure and that in some way incapacitates the person. At first glance, it looks as if you don’t have any ailment, that’s why sometimes employers don’t notice the suffering of people at work”.
As an alternative to this, there are reasonable accommodations that patients can request in work or educational environmentseveral of them are: access to a bathroom at any time, time for medical appointments, flexible work, reduced work hours, time and place for medicine and change of clothes. And in the school environment specifically, it is advisable to register in the special education modality.
The ways to request it vary in each area. In the workplace, the person can request a meeting with immediate supervisordiscuss the need for reasonable accommodation and submit medical support, while in education, you can go to the office of students with disabilities, request a meeting with managers and counselors and in the same way submit medical evidence.
“My daughter suffers from hidradenitis, in general it impacts her life and her studies, many times the abscess bursts and stains at any time,” said Pagán.
About half of the patients with Hidradenitis Supurativa have to take time off from work at some point during the year due to their illness, so in the event that they do not obtain an affirmative answer to the reasonable change or have exhausted all resources, the Lic. Marrero emphasizes that “people can file a complaint with the Equal Employment Opportunity Commission, EEOC.”
Hidradenitis in Puerto Rico
Dr. Alma M. Cruz, Assistant Professor of the Department of Dermatology at the Medical Sciences Campus (RCM), this condition where the patient presents inflammatory nodules, abscesses and draining fistulas, can be confused with other conditions such as folliculitis, carbuncles, abscesses, fungi deep acne, acne conglobata and venereal diseases.
It has been reported that up to 80% of patients with Hidradenitis Suppurativa are obese. Whether due to mechanical factors of friction, traction or compression, obesity promotes local irritation, sweat retention and follicular hyperkeratinization, which added to the pro-inflammatory state observed in these subjects results in a greater severity of the condition. Losing weight has been associated with a partial improvement of the condition in some cases”, he indicates.
Similarly, it mentions the use of cigarettes as “another factor directly associated with the onset of the disease and has been described in up to 90% of cases.” “Cigarette toxins are responsible for promoting the development of inflammatory toxins, stimulating and maintaining neutrophil chemotaxis and increasing the virulence of staph aureus, thus perpetuating inflammatory processes. Despite these findings, it has not been possible to corroborate that stopping smoking has an important impact on the control of the disease”.
Also, Dr. Cruz reveals that “around 40 percent of Hidradenitis Suppurativa cases have a family genetic predisposition, with a pattern that suggests dominant autonomic inheritance with incomplete penetrance.”
See the full program: