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2021, Number 1

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Medicentro 2021; 25 (1)

Home rehabilitation for epidermolysis bullosa

Hernández SR, Morales MM, Castro RJA
Full text How to cite this article

Language: Spanish
References: 10
Page: 126-136
PDF size: 456.94 Kb.


Key words:

MeSH: epidermolysis bullosa, house calls..

ABSTRACT

Epidermolysis bullosa is a heterogeneous group of genetically determined chronic diseases characterized by blistering of the skin and mucosa. This rare condition is also called "butterfly or crystal skin children", and it can cause them a neurodevelopmental delay. Complications are disabling, affect quality of life, and can cause death. Home rehabilitation of a one-year-old baby affected by simple epidermolysis bullosa was performed with active participation of caregivers; this rehabilitation consisted of postural treatment, respiratory exercises, joint mobilization, play therapy, occupational therapy and phoniatric-logopedic care. The patient was able to sit alone, acquired sitting balance, parachute reflex appeared, and smiled when stimulating after 12 weeks of physiotherapy. Treatment must be early (from birth), individualized and comprehensive. Massage and physical agents are contraindicated because they can cause skin damage.


REFERENCES

  1. Fine JD, Mellerio JE. Epidermólisis ampollosa. En: Bolognia JL, Schaffer JV, Cerroni L. Dermatología. 4.a ed. España: Elsevier; 2019 [citado 1 feb. 2020]. Disponible en: https://www.clinicalkey.es/#!/content/book/3-s2.0-B9788491133650000322?scrollTo=%23top

  2. Torres-Iberico R, Palomo-Luck P, Torres-Ramos G, Lipa-Chancolla R. Epidermólisis bullosa en el Perú: Estudio clínico y epidemiológico de pacientes atendidos en un hospital pediátrico de referencia nacional, 1993-2015. Rev Perú Med Exp Salud Pública [internet]. 2017 [citado 1 feb. 2020];34(2):[aprox. 8 p.]. Disponible en: https://www.scielosp.org/pdf/rpmesp/2017.v34n2/201-208/es

  3. Bayart CB, Brandling-Bennett HA. Enfermedades cutáneas congénitas y hereditarias. En: Gleason CA, Juul SE. Avery. Enfermedades del recién nacido. 10.a ed. España: Elsevier; 2019 [citado 1 feb. 2020]. Disponible en: https://www.clinicalkey.es/#!/content/book/3-s2.0-B9788491133889001045

  4. Velázquez Ávila Y, Morales Solís M. Enfermedades genéticas de la piel. Rev Electrón Dr. Zoilo E. Marinello Vidaurreta [internet]. nov. 2015 [citado 27 ene. 2020];40(11):[aprox. 8 p.]. Disponible en: http://www.revzoilomarinello.sld.cu/index.php/zmv/article/view/363

  5. Sánchez Macías LR, García Retana PP, Viego Romero ME. Epidermólisis bullosa congénita (piel de cristal). Acta Méd Centro [internet]. 2012 [citado 14 ene. 2020];6(4):[aprox. 3 p.]. Disponible en: http://www.actamedica.sld.cu/r4_12/epidermolisis.htm

  6. Gómez Guerra L. La niña de "porcelana". Juventud Rebelde. 10 ene. 2018; Secc. Ciencia y Técnica:(col. 1) [citado 14 ene. 2020]. Disponible en: http://www.juventudrebelde.cu/cuba/2018-01-10/la-nina-de-porcelana

  7. Stachow R, Küppers-Chinnow M, Scheewe S. Rehabilitation of Children and Adolescents with Chronic Skin Diseases. Rehabilitation (Stuttg). 2017 Apr. 10;56(2):127-40.

  8. Equipo Enfermería, Psicología y Trabajo Social, Piel de Mariposa-DEBRA. Enfermería a domicilio, un apoyo sanitario, psicológico y social. Rev BienEstar [internet]. 2019 [citado 18 jul. 2020];(47):[aprox. 7 p.]. Disponible en: https://www.pieldemariposa.es/wp-content/uploads/2019/03/N47_BienEstar-Enfermeria-a-domicilio.pdf

  9. Yubero MO, Fuentes C, Fuentes I, Calvo M, Orellana M, Kramer S, et al. Manual de manejo integral de pacientes con epidermólisis bullosa. Niños Piel de Cristal. 2.a ed. Santiago de Chile: Fundación DEBRA; 2018.

  10. Chan JM, Weisman A, King A, Maksomski S, Shotwell C, Bailie C, et al. Occupational therapy for epidermolysis bullosa: clinical practice guidelines. Orphanet J Rare Dis. 2019 Jun. 7;14(1):129.




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