Dermatol. praxi. 2023;17(2):66-71 | DOI: 10.36290/der.2023.011

Care for children with epidermolysis bullosa

Mgr. Petra Šimánková
Slezská univerzita v Opavě, Fakulta veřejných politik, Ústav nelékařských zdravotnických studií, Opava

Children with epidermolysis bullosa (EB) are a rare population with high morbidity and mortality. EB has a profound impact on the daily life of the patient and family members, on the child's physical, psychological and mental health, including disruption of social relationships. It is common for EB patients to be cared for by health professionals who are not specialized in this rare disorder. Health professionals educate parents about safety and preventive steps in caring for a child with EB, how to treat the child, how to recognize the characteristics of a wound, how to care for wounds, how to breastfeed and feed the child, etc. Increasing the knowledge of all healthcare professionals on EB issues, including age at clinical diagnosis and severe clinical signs, will support the optimisation of healthcare and nursing practices and contribute to improving the quality of life of paediatric patients with EB.

Keywords: epidermolysis bullosa, children, prognosis, complications, nursing care.

Accepted: June 1, 2023; Published: June 7, 2023  Show citation

ACS AIP APA ASA Harvard Chicago Chicago Notes IEEE ISO690 MLA NLM Turabian Vancouver
Šimánková P. Care for children with epidermolysis bullosa. Dermatol. praxi. 2023;17(2):66-71. doi: 10.36290/der.2023.011.
Share...
Download citation
  • BibTeX (.bib)
  • Bookends (.ris)
  • EasyBib (.ris)
  • EndNote (.enw)
  • EndNote 8 (.xml)
  • ISI WoS (.isi)
  • Medlars (.medlars)
  • Mendeley (.ris)
  • MODS (.xml)
  • Papers (.ris)
  • RefWorks (.txt)
  • RefManager (.ris)
  • RIS (.ris)
  • MS Word (.xml)
  • Zotero (.ris)
    • Open full article

    References

    1. Marchili Mr, Spina G, Roversi M, et al. Epidermolysis Bullosa in children: the central role of the pediatrician. Orphanet Journal of Rare Diseases [Internet]. 2022;17(1) [cit. 2022-08-22]. ISSN 1750-1172. Available from: doi:10.1186/s13023-021-02144-1. Go to original source... Go to PubMed...
    2. Mellerio J, El Hachem EM, Bellon N, et al. Emergency management in epidermolysis bullosa: consensus clinical recommendations from the European reference network for rare skin diseases. Orphanet Journal of Rare Diseases [Internet]. 2020;15(1) [cit. 2022-08-22]. ISSN 1750-1172. Available from: doi:10.1186/s13023-020-01403-x. Go to original source... Go to PubMed...
    3. Ott Hc, Eich C, Schriek K, Ludwikowski B. Epidermolysis bullosa hereditaria bei Schulkindern und Adoleszenten. Der Hautarzt [Internet]. 2016;67(4):279-286 [cit. 2022-08-21]. ISSN 0017-8470. Available from: doi:10.1007/s00105-016-3774-6. Go to original source... Go to PubMed...
    4. Chan J, Weisman MA, King A, et al. Occupational therapy for epidermolysis bullosa: clinical practice guidelines. Orphanet Journal of Rare Diseases [Internet]. 2019;14(1) [cit. 2022-08-25]. ISSN 1750-1172. Available from: doi:10.1186/s13023-019-1059-8. Go to original source... Go to PubMed...
    5. Lu Cy, Hsieh MS, Wei KC, et al. Gastrointestinal involvement of primary skin diseases. Journal of the European Academy of Dermatology and Venereology [Internet]. 2020;34(12): 2766-2774 [cit. 2022-10-12]. ISSN 0926-9959. Available from: doi:10.1111/jdv.16676. Go to original source... Go to PubMed...
    6. Manjunath SR, Mahajan D, Handa S, et al. The severity of malnutrition in children with epidermolysis bullosa correlates with disease severity. Scientific Reports [Internet]. 2021;11(1) [cit. 2022-08-21]. ISSN 2045-2322. Available from: doi:10.1038/s41598-021-96354. Go to original source... Go to PubMed...
    7. Khan MT, O'sullivan M, Faitli B, et al. Foot care in epidermolysis bullosa: evidence-based guideline. British Journal of Dermatology [Internet]. 2020;182(3):593-604 [cit. 2022-10-19]. ISSN 0007-0963. Available from: doi:10.1111/bjd.18381. Go to original source... Go to PubMed...
    8. Tuncer S, Sezgin B, Kaya B, et al. An algorithmic approach for the management of hand deformities in dystrophic epidermolysis bullosa. Journal of Plastic Surgery and Hand Surgery [Internet]. 2017;52(2):80-86 [cit. 2022-10-09]. ISSN 2000. Available from: doi:10.1080/2000656X.2017.1338183. Go to original source... Go to PubMed...
    9. Lembo F, Parisi D, Cecchino LR, et al. Release of pseudosyndactyly in recessive dystrophic epidermolysis bullosa using a dermal regeneration template glove: the Foggia experience. Orphanet Journal of Rare Diseases [Internet]. 2021;16(1) [cit. 2022-10-09]. ISSN 1750-1172. Available from: doi:10.1186/s13023-021-01697-5. Go to original source... Go to PubMed...
    10. Nedelcuţă R, Călin G, Nedelcuţă, et al. Collagen-based biomaterials with possible therapeutic effects. Journal of Mind and Medical Sciences [Internet]. 2021;324-329 [cit. 2022-08-28]. ISSN 23927674. Available from: doi:10.22543/7674.82.P324329. Go to original source...
    11. Breitenbach J, Gruber Ch, Klausegger A, et al. Pseudosyndactyly - an inflammatory and fibrotic wound healing disorder in recessive dystrophic epidermolysis bullosa. JDDG: Journal der Deutschen Dermatologischen Gesellschaft [Internet]. 2015;13(12):1257-1266 [cit. 2022-08-21]. ISSN 16100379. Available from: doi:10.1111/ddg.12839. Go to original source... Go to PubMed...
    12. Has C, El Hachem M, Bučková H, et al. Practical management of epidermolysis bullosa: consensus clinical position statement from the European Reference Network for Rare Skin Diseases. Journal of the European Academy of Dermatology and Venereology [Internet]. 2021;35(12):2349-2360 [cit. 2022-08-24]. ISSN 0926-9959. Available from: doi:10.1111/jdv.17629. Go to original source... Go to PubMed...
    13. Krämer S, Lucas J, Gamboa F, et al. Clinical practice guidelines: Oral health care for children and adults living with epidermolysis bullosa. Special Care in Dentistry [Internet]. 2020;40(S1):3-81 [cit. 2022-09-12]. ISSN 0275-1879. Available from: doi:10.1111/scd.12511. Go to original source... Go to PubMed...
    14. Reimer A, Hess M, Schwieger-Briel A, et al. Natural history of growth and anaemia in children with epidermolysis bullosa: a retrospective cohort study*. British Journal of Dermatology [Internet]. 2020;182(6):1437-1448 [cit. 2022-08-21]. ISSN 0007-0963. Available from: doi:10.1111/bjd.18475. Go to original source... Go to PubMed...
    15. Hartenstein-Pinter A, Hübner-Möhler B, Zernikow B, et al. Verbandsmaterial bei Kindern mit Epidermolysis bullosa. Der Schmerz [Internet]. 2020;34(2):156-165 [cit. 2022-08-27]. ISSN 0932. Available from: doi:10.1007/s00482-019-00439-8. Go to original source... Go to PubMed...
    16. Retrosi Ch, Diociaiuti A, Ranieri C, et al. Multidisciplinary care for patients with epidermolysis bullosa from birth to adolescence: experience of one Italian reference center. Italian Journal of Pediatrics [Internet]. 2022;48(1) [cit. 2022-09-11]. ISSN 1824-7288. Available from: doi:10.1186/s13052-022-01252-3. Go to original source... Go to PubMed...
    17. El Hachem M, Zambruno G, Bourdon-Lanoy E, et al. Multicentre consensus recommendations for skin care in inherited epidermolysis bullosa. Orphanet Journal of Rare Diseases [Internet]. 2014;9(1) [cit. 2022-08-27]. ISSN 1750-1172. Available from: doi:10.1186/1750-1172-9-76 . Go to original source... Go to PubMed...
    18. Kaur J, Budhwar J, Maheshwary A, Bhatti KS. Blistering in a newborn: a rare case report. Int J Res Dermatol. 2020;6(3):432. doi: 10.18203/issn.2455-4529.IntJResDermatol20201596. Go to original source...

    Return to the content


    Dermatology for Practice

    Madam, Sir,
    please be aware that the website on which you intend to enter, not the general public because it contains technical information about medicines, including advertisements relating to medicinal products. This information and communication professionals are solely under §2 of the Act n.40/1995 Coll. Is active persons authorized to prescribe or supply (hereinafter expert).
    Take note that if you are not an expert, you run the risk of danger to their health or the health of other persons, if you the obtained information improperly understood or interpreted, and especially advertising which may be part of this site, or whether you used it for self-diagnosis or medical treatment, whether in relation to each other in person or in relation to others.

    I declare:

    1. that I have met the above instruction
    2. I'm an expert within the meaning of the Act n.40/1995 Coll. the regulation of advertising, as amended, and I am aware of the risks that would be a person other than the expert input to these sites exhibited

    No
    Yes

    If your statement is not true, please be aware
    that brings the risk of danger to their health or the health of others.