Abstract
Background: Epidermolysis bullosa (EB) patient anecdotes and case reports indicate that cannabinoid-based medicines (CBMs) may alleviate pain and pruritus and improve wound healing. CBM use has not been characterized in the
EB patient population.
Objectives: To evaluate CBM use among EB patients, including CBM types, efects on symptoms (e.g., pain and pruritus), disease process (e.g., blistering, wounds, and infammation), well-being (e.g., sleep, appetite) and concomitant
medications.
Methods: English-speaking EB patients or caregivers completed an online international, anonymous, cross-sectional
survey regarding CBM use. Respondents reported the types of CBMs, subsequent efects including perceived EB
symptom alteration, changes in medication use, and side efects.
Results: Seventy-one EB patients from fve continents reported using or having used CBMs to treat their EB. Missing question responses ranged between 0 (0%) and 33 (46%). Most used more than one CBM preparation (mean:
2.4±1.5) and route of administration (mean: 2.1±1.1). Topical and ingested were the most common routes. Pain and
pruritus were reported retrospectively to decrease by 3 points (scale: 0–10; p<0.001 for both) after CBM use. Most
reported that CBM use improved their overall EB symptoms (95%), pain (94%), pruritus (91%) and wound healing (81%).
Most participants (79%) reported decreased use of pain medications. The most common side-efect was dry mouth
(44%).
Conclusions: CBMs improve the perception of pain, pruritus, wound healing, and well-being in EB patients and
reduced concomitant medication use. Nevertheless, a direct relation between the use of CBMs and reduction of the
above-mentioned symptoms cannot be proven by these data. Therefore, future controlled studies using pharmaceutically standardised CBM preparations in EB are warranted to delineate the risks and benefts of CBMs.
Keywords: Epidermolysis bullosa, Cannabinoid-based medicines, Symptom alleviation, Patient driven research,
Genodermatoses, Survey, Pain, Itch, Wounds
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