Epidermolysis bullosa

Others

5. Pain in special situations

Mortality in patients with EB can vary depending on the type and evolution of the disease, being the severe junctural types the ones with higher risk of death during the first years of life.

In EB, being a chronic disease without a definitive cure, it is essential to offer a palliative approach of the symptoms. The palliative approachis aimed at relieving the physical, emotional and spiritual suffering of patients and includes support for the entire family. In severe subtypes of EB, it is frequent the appearance of metastatic squamous cell carcinomas, which will require an energetic treatment of the pain associated to cancer. On a pharmacological level, the morphine derivatives (or opiates, which we have already talked about previously) are usually effective, but many times other adjuvant medications must be administered. In these cases, if the person cannot ingest the medication, intravenous therapy, sub cutaneal or even the use of transdermalpatches may be indicated. As the latter as usually very adhesive, they must always be removed with adhesive removing products to avoid injuries. The palliative approach becomes more necessary in most advanced stages of the disease and, as in other diseases, it is essential in the end-of-life situations.

Last modified
26 March 2025