People with epidermolysis bullosa (EB) experience a deterioration in oral health, which is linked to poor health-related quality of life. That’s according to a study in Germany, which also found patients with dystrophic EB had poorer oral health and worse oral health-related quality of life when compared with…

Many patients with dystrophic epidermolysis bullosa (DEB) need the help of a caregiver at home, and this adds up to their direct costs, which are higher than the mean costs of all patients with epidermolysis bullosa, according to a study covering five countries in Europe.  On average,…

The effect of epidermolysis bullosa (EB) on oral health significantly affects the quality of life of children living with the disease, a recent study highlights. “The best way to help patients with EB and meet their demands is to improve daily oral hygiene habits and preventive measures (regular dental…

Pain, but not wound size, significantly affects a person’s perception of disease severity with dominant dystrophic epidermolysis bullosa (DEB), a study reports. Chronic open wounds, difficulty swallowing or walking, and anal narrowing also plays into patients’ perceptions of their disease’s severity. The study, “Patient-reported outcomes and…

Ways to improve the quality of life for people with epidermolysis bullosa (EB) are needed, as those living with the disorder report a range of psychological and social impacts. In a series of interviews, a group of children and young adults with EB described their disease as significantly affecting…

Children with epidermolysis bullosa (EB) who accept their condition and emotionally detach themselves from it tend to have a better quality of life than children who are very emotional and use other strategies to cope with their disease, a Dutch study has found. Likewise, when the parents of these…

When injected into the bloodstream, mesenchymal stem cells (MSCs) — cells that can grow into different cell types and have potent regeneration properties — can temporarily reduce pain, skin itching and blistering, and improve the quality of life of children and adults with recessive dystrophic epidermolysis bullosa…

Finding treatments and potential cures for rare diseases is crucial, but so is the quality of patients’ lives — a rather nebulous term that means different things to different people. “Recently, there’s been much more of a focus on Quality of Life (QoL) issues, real-world evidence and patient-reported outcomes,” said…

Results from a Phase 1/2 trial in recessive dystrophic epidermolysis bullosa (RDEB) showed that gene therapy candidate EB-101 led to durable wound healing and improved quality of life, according to Abeona Therapeutics. The updated findings on Abeona’s investigational skin graft cell therapy were recently presented at the…

Feeding through a tube inserted directly into the stomach, a process known as gastrostomy, is a potentially beneficial strategy for improving nutritional intake in epidermolysis bullosa (EB) patients, a review study suggests. The study, “Effectiveness of Gastrostomy for Improving Nutritional Status and Quality of Life in Patients…

Many adults and children with epidermolysis bullosa simplex (EBS-l) experience pain that can significantly impact their quality of life, but they lack access to adequate pain-management options, a questionnaire-based study found. The study, “Pain and quality of life evaluation in patients with localized epidermolysis bullosa simplex,” was published in…