Epidermolysis Bullosa
The 3-hour bandage change your patient endured this morning is invisible to their medical record.
Epidermolysis Bullosa is a daily battle of wound care, pain management, and nutritional survival — yet clinical assessment relies on periodic wound counts and clinic-visit pain scores that miss the daily trajectory entirely. Three disease-modifying therapies launched between 2023-2025, and the field urgently needs real-world outcome data that no existing tool captures. Forma provides this continuous signal.
Forecast
Based on prior Topics logging
Topics
How it works
15 seconds of speech. 25 data points.
Forma turns each patient into a continuous data stream. By voice or text, patients and caregivers log daily wound counts, pain across three dimensions (background, procedural, breakthrough), itch severity, treatment application and per-wound response, nutritional intake, hand function changes, and suspicious wound changes in under a minute. Voice-first is essential — many EB patients have mitten hands from pseudosyndactyly and cannot type. The result is a structured, longitudinal dataset across every EB domain — Vyjuvek healing trajectories per treated wound, pain trends correlated with bandage change techniques, and cancer surveillance flags visible in real time.
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Forecast
Based on prior Topics logging
Topics
Structured, coded, longitudinal
- Timing
- Time of onset:This morningShower duration:15 min
- Location
- Crack location:Feet
- Severity
- Crack count:3 newCrack status:New onsetPain severity:Extreme
- Actions
- Cream applied:Vanicream
- Environmental
- Humidity:34%Temperature:72°FAir quality (AQI):42 — Good
- Outcome
- Pain outcome:Significantly decreasedTreatment response:Positive
From data to insights
What the data reveals
Daily voice logs compound into actionable insights — for patients managing their condition and for researchers running studies.
For Patients
Which wounds are responding to Vyjuvek?
The large wound on Lily's upper back is fully healed after 9 days of treatment. The two remaining back wounds are 40% smaller. The leg wound shows no change — flagged for your dermatologist.
Back wound healing
How much time am I spending on wound care?
You averaged 2.3 hours per bandage change this week — down from 3.1 hours two weeks ago. Total weekly wound care: 16 hours. Stuck dressings caused complications in 2 of 7 sessions.
Daily care hours
Is her nutrition getting worse?
Oral intake dropped 3 of the last 5 days due to mouth blisters. G-tube carried most calories on those days. Her weight is 22 kg — slight downtrend. Hemoglobin 8.2, iron infusions planned.
Oral intake trend
Can you summarize the last 3 weeks for our EB clinic?
Wound count dropped from 15 to a best-ever low. One Vyjuvek wound fully healed by day 9. Hemoglobin 8.2 — iron infusions starting. Hand release surgery day 17. Non-healing leg wound >4 months — biopsy scheduled. Weekly wound care burden: 16 hours.
For Researchers
What is the per-wound Vyjuvek healing trajectory?
Across 38 RDEB patients, treated wounds show 50% area reduction by week 3 (median). Complete closure in 42% of wounds by week 6. Back and trunk wounds respond fastest; extremity wounds lag by ~2 weeks.
Wound area reduction
Trend
What predicts wound care complications?
Stuck dressings occur in 28% of sessions. Risk factors: Mepilex without silicone interface (OR 2.8), session duration >3 hours (OR 1.9), and ambient humidity <35% (OR 1.6). New skin tears from dressing removal average 1.2 per week.
Complication rate
Trend
How does nutritional status correlate with wound healing?
Albumin <3.0 predicts 2.4x slower wound closure (p<0.01). Patients with >80% oral intake days show 37% faster healing than G-tube-dependent patients. Iron deficiency (Hgb <9) independently delays healing.
Healing vs. nutrition
Trend
What is the real caregiver burden in severe EB?
Mean weekly wound care: 18.4 hours (SD 6.2). Caregivers report PHQ-9 scores averaging 14.2 (moderate-severe depression). Voice logging captures 94% adherence vs 31% paper — critical for mitten-hand patients.
Weekly care hours
Trend
Lily has about 15 open wounds. Three new blisters on her arms from getting dressed. Background pain a 6. Full bandage change: 3 hours.
Bandage change was brutal — she screamed the whole time, easily a 9 for procedural pain. Gauze stuck on elbow, tore skin.
Applied Vyjuvek to three wounds on her back. The big one starting to close — new skin visible. Itching unbearable tonight — scratching at bandages, severity 9.
She scratched through bandage, made a new blister on arm. Barely ate — just yogurt. Mouth blisters worse. Had to increase hydroxyzine.
Home nurse did the full change — 2 hours, no complications. Had to use G-tube for most calories. She managed a PediaSure by mouth.
Labs: hemoglobin 8.2 — they want to start iron infusions. Albumin still low at 2.8. Vyjuvek wound on upper back is fully healed! Down to treating 2 wounds.
Down to 10 active wounds — best count in weeks. No new blisters today. Good appetite — three soft meals. Corneal abrasion this morning though.
Drove 4 hours to Stanford EB clinic. Routine follow-up — they're pleased with Vyjuvek progress. Worried about the non-healing leg wound — scheduling biopsy.
Hand release surgery today. Surgeon said it went well. Fingers fusing more on right — she couldn't hold a crayon before. Weight 22 kg, slight loss.
Infection signs on trunk wound are gone. No new blisters. She slept 6 hours — woke twice from pain but got back to sleep. Best week in months.
She didn't want to go to school because of how her arms look — but wound count is the lowest it's been. Vyjuvek working. This week: 16 hours on wound care total.
Key insight
Over three weeks, Megan's daily logs capture the real-world Vyjuvek response that a clinic visit cannot: one treated wound fully healed by day 9, wound count dropping from 15 to a best-ever low by day 22, alongside the daily realities of a stuck dressing tearing new skin on day 2, a scratch-through blister on day 5, and hemoglobin at 8.2 driving iron infusion plans. The data pairs treatment trajectory (Vyjuvek healing visible by day 3) with complication rates (dressing injury, oral blisters limiting nutrition) and the 16-hour weekly wound care burden that defines life with severe EB.
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