Navigating life with oral lichen planus is easier when you have access to reliable resources, support networks, and helpful tools. This comprehensive guide connects you with valuable information and support systems.
Medical and Professional Organizations
American Academy of Oral Medicine (AAOM)
What They Offer:
- Professional organization for oral medicine specialists
- Patient education materials
- Find-a-specialist directory
- Evidence-based treatment information
- Research updates
Website: http://www.aaom.com
American Academy of Dermatology (AAD)
What They Offer:
- Dermatologist directory
- Patient education on lichen planus
- Skin and oral condition information
- Annual meetings with patient education components
Website: http://www.aad.org
National Institute of Dental and Craniofacial Research (NIDCR)
What They Offer:
- Government-funded research information
- Patient education materials
- Clinical trials database
- Oral health resources
Website: http://www.nidcr.nih.gov
American Dental Association (ADA)
What They Offer:
- Find a dentist tool
- Oral health information
- Patient education resources
- Standards of care
Website: http://www.ada.org
Online Support Communities
Facebook Groups
Active OLP Communities:
- “Oral Lichen Planus Support Group”
- “Lichen Planus Warriors”
- “Living with Oral Lichen Planus”
Benefits:
- Connect with others experiencing OLP
- Share experiences and coping strategies
- Ask questions and get peer support
- Learn about new treatments from other patients
- Reduce feelings of isolation
Relevant Communities:
- r/lichenplanus
- r/AutoimmuneDisease
- r/ChronicPain
Clinical Trials and Research
ClinicalTrials.gov
What It Is:
- U.S. government registry of clinical trials
- Searchable database
- Updated regularly
- Free access
How to Search:
- Visit http://www.clinicaltrials.gov
- Search “oral lichen planus”
- Filter by location, status, and study type
- Review eligibility criteria
Why Participate:
- Access to cutting-edge treatments
- Contribute to medical knowledge
- Close medical monitoring
- Possible symptom improvement
- Usually at no cost
Oral Care Products
Toothpaste Recommendations
SLS-Free Options:
- Sensodyne Pronamel Gentle Whitening
- Tom’s of Maine Simply White (SLS-free)
- Biotene Gentle Formula
- Hello Sensitivity Relief
- Jason Simply Natural
Oral Rinses
Gentle Options:
- Biotene Dry Mouth Oral Rinse
- CloSYS Sensitive Mouthwash
- TheraBreath Fresh Breath
- ACT Restoring Anticavity Fluoride
Dry Mouth Products
Saliva Substitutes:
- Biotene Oral Balance Gel
- Biotene Moisturizing Spray
- Oasis Moisturizing Mouthwash
- XyliMelts Discs (for nighttime)
- ACT Dry Mouth Lozenges
Available at:
Most pharmacies, online retailers (Amazon, Walgreens.com, CVS.com), and dental offices.
Financial Resources
Medication Assistance Programs
NeedyMeds:
- http://www.needymeds.org
- Database of patient assistance programs
- Free and low-cost medication information
- Discount cards
RxAssist:
- http://www.rxassist.org
- Patient assistance programs
- Application information
- Eligibility requirements
Pharmaceutical Company Programs:
- Many drug manufacturers offer assistance
- Check specific medication websites
- Income-based eligibility
- Application required
Insurance Advocacy
Patient Advocate Foundation:
- http://www.patientadvocate.org
- Help with insurance issues
- Case management services
- Free patient assistance
Healthcare.gov:
- http://www.healthcare.gov
- Information on health insurance options
- Marketplace enrollment
- Medicaid eligibility
Disability and Workplace Resources
Americans with Disabilities Act (ADA)
Information:
- http://www.ada.gov
- Workplace accommodations
- Your rights as a patient
- Request reasonable accommodations
Job Accommodation Network (JAN):
- askjan.org
- Free consulting service
- Workplace accommodation ideas
- ADA compliance information
Mobile Apps and Digital Tools
Symptom Tracking
MySymptoms Food Diary:
- Track food and symptom correlations
- Identify triggers
- Export reports for doctors
Flaredown:
- Track symptoms, triggers, treatments
- Designed for chronic conditions
- Visualize patterns over time
Bearable:
- Comprehensive symptom and mood tracking
- Medication reminders
- Generate reports for healthcare visits
Medication Management
Medisafe:
- Medication reminders
- Drug interaction checker
- Refill reminders
MyTherapy:
- Pill reminders
- Activity tracking
- Health journal
Stress Management and Wellness
Headspace:
- Guided meditation
- Stress reduction
- Sleep assistance
Calm:
- Meditation and mindfulness
- Sleep stories
- Breathing exercises
Insight Timer:
- Free meditation app
- Thousands of guided meditations
- Community features
Dietary Resources
Recipe Websites for Soft Diets
EatingWell:
- Healthy recipes with soft food options
- Nutritional information included
- Search by dietary restrictions
AllRecipes:
- User-submitted recipes
- Reviews and modifications
- Filter by dietary needs
Nutritional Support
Academy of Nutrition and Dietetics:
- Find a registered dietitian
- http://www.eatright.org
- Nutrition information
- Credible dietary advice
Second Opinion Resources
Major Medical Centers with OLP Expertise
Academic Medical Centers:
- University of California, San Francisco
- University of Pennsylvania
- University of Michigan
- Mayo Clinic (Arizona, Florida, Minnesota)
- Cleveland Clinic
- Johns Hopkins
Why Consider These Centers:
- Specialized expertise
- Multidisciplinary approach
- Access to clinical trials
- Latest treatment options
Emergency Resources
When to Seek Immediate Care
Go to ER or Call Doctor Immediately If:
- Difficulty breathing or swallowing
- Severe bleeding that won’t stop
- Signs of infection (fever, swelling, pus)
- Sudden severe pain
- Allergic reaction to medication
Have Ready:
- List of current medications
- Name and number of your specialist
- Recent medical records if possible
- Insurance information
Creating Your Personal Resource Folder
Organize Information
Keep Together:
- Healthcare provider contact information
- Medication list with dosages
- Pharmacy information
- Insurance cards and information
- Recent test results and biopsy reports
- Emergency contacts
- Symptom diary
- Treatment timeline
Digital Options:
- Scan documents to phone or cloud storage
- Use health tracking apps
- Create folder in email for medical correspondence
- Password-protected document with key information
Staying Informed
Reliable Health News Sources
Medical News Sites:
- MedlinePlus (medlineplus.gov)
- Mayo Clinic News Network
- Cleveland Clinic Health Essentials
- WebMD (verify with other sources)
Be Cautious Of:
- Miracle cure claims
- Unverified testimonials
- Supplements with extreme promises
- Sites selling products
- Information without source citations
Evaluate Sources:
- Check author credentials
- Look for citations
- Verify with multiple sources
- Discuss with your doctor
The Bottom Line
You don’t have to navigate oral lichen planus alone. Numerous resources exist to support you – from professional organizations and support communities to practical tools and financial assistance. Building your personal resource network takes time, but these connections can significantly improve your ability to manage OLP effectively. Remember to verify medical information with your healthcare providers and be an active participant in your care.
This resource guide provides starting points for information and support. Always verify medical information with qualified healthcare professionals and use reputable sources. Resource availability and contact information may change over time.
Oral LP 
Leave a comment