Patient & Caregiver Toolkit
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About RRP
Recurrent Respiratory Papillomatosis (RRP) is a rare, chronic disease caused by the human papillomavirus (HPV), specifically types 6 and 11.
RRP is characterized by the growth of benign (non-cancerous) tumors called papillomas in the respiratory tract, particularly on and around the vocal cords in the larynx (voice box). These growths can also spread to other parts of the respiratory system, such as the trachea, bronchi, and lungs.
Symptoms of RRP
Hoarseness: The most common symptom, caused by papillomas interfering with the normal vibration of the vocal cords.
Chronic cough: Persistent coughing due to irritation in the respiratory tract.
Difficulty breathing: In severe cases, the tumors can obstruct the airway, leading to breathing difficulties.
Voice changes: Changes in voice quality, such as a weak or strained voice.
Types of RRP
Juvenile-onset RRP: Typically diagnosed before age 5 and often more aggressive, requiring frequent surgical interventions.
Adult-onset RRP: Usually diagnosed after age 14 and tends to be less aggressive.
How is RRP contracted?
RRP is caused by HPV types 6 and 11. The virus can be transmitted from mother to child during childbirth, or through sexual contact.
How is RRP diagnosed?
Laryngoscopy: A procedure where a scope is used to view the larynx and detect papillomas.
Biopsy: A sample of the growth may be taken to confirm the diagnosis.
Current Treatment Options
Recurrent Respiratory Papillomatosis is a challenging condition to manage due to the recurrent nature of the papillomas.
There is currently one FDA-approved therapy, zopapogene imadenovec (Papzimeos, Precigen, inc.), specifically for the treatment of RRP in adults. Another potential non-surgical treatment option has been submitted to the FDA for review sometime in 2026.
Current Treatment Options
Immunotherapy: Zopapogene imadenovec (Papzimeos, Precigen, inc.) was approved for adults with RRP in 2025 by the FDA. You can learn more by contacting Papzimeos patients support at (866) 827-8180.
Microsurgical excision: This is the most common treatment, where the papillomas are surgically removed under general anesthesia. Techniques include using a CO2 laser, microdebrider, or cold steel instruments.
Laser therapy: Various lasers, such as the CO2 laser and Potassium Titanyl Phosphate (KTP) laser, are used to remove papillomas. Pulse dye laser therapy is also being evaluated for its effectiveness.
Antiviral medications: Medications like cidofovir have been used to reduce the recurrence of papillomas. However, their effectiveness can vary.
Interferon therapy: This treatment aims to boost the immune system to fight the HPV virus, though it is less commonly used because of its side effects.
Photodynamic therapy: This involves using a photosensitizing agent and light to destroy papillomas. It is still under investigation.
Vaccination: The HPV vaccine can prevent the initial infection with HPV types 6 and 11, which cause RRP. It is recommended for children and young adults.
Voice therapy: This helps patients manage voice changes and improve vocal function.
Regular monitoring: Frequent follow-ups with an ENT specialist are needed to monitor and manage the condition.
Adjunct Therapies
Adjunct therapies for Recurrent Respiratory Papillomatosis are used alongside primary treatments to help manage the condition more effectively. Here are some of the current adjunct therapies:
DIM: This is a compound derived from the digestion of indole-3-carbinol, found in cruciferous vegetables like broccoli and cabbage. It is believed to help reduce estrogen-sensitive growths, including RRP.
Usage: Often taken as a dietary supplement, DIM’s effectiveness in RRP is still under research, and results can vary.
Cidofovir: This antiviral medication works by inhibiting the replication of DNA viruses.
Usage: Administered intralesionally (directly into the papillomas) after surgical removal of the growths. It has shown some success in reducing recurrence.
Bevacizumab: This monoclonal antibody inhibits vascular endothelial growth factor, which is involved in tumor growth.
Usage: Can be administered intralesionally or intravenously. It has shown promise in reducing the size and recurrence of papillomas.
Gardasil: This vaccine protects against HPV types 6 and 11, which cause RRP.
Usage: While primarily used for prevention, there is ongoing research into its potential therapeutic benefits for existing RRP cases.
Photodynamic therapy: This therapy involves using a photosensitizing agent and light to destroy papillomas.
Usage: Still under investigation, this treatment offers a non-surgical option for managing RRP.
Interferons: These are proteins that boost the immune system’s response to viruses.
Usage: Less commonly used due to side effects, but it can be an option for some patients.
These adjunct therapies are often used in combination with primary surgical treatments to help manage RRP. It’s important to discuss these options with your healthcare provider to determine the best approach for your specific case.
Managing Care
Quality care for RRP is crucial and often more beneficial than relying on emergency department visits.
Key Considerations
Specialized care: Healthcare providers who specialize in rare diseases have the expertise and experience to manage these conditions effectively. They are familiar with the latest treatments, research, and best practices.
Continuity of care: Regular visits to specialists ensure continuous monitoring and management of the disease, which is essential for chronic conditions.
Multidisciplinary approach: Quality care often involves a team of specialists, including primary care physicians, geneticists, and other healthcare professionals, who work together to provide comprehensive care.
Personalized treatment plans: Specialists can develop individualized treatment plans tailored to the specific needs of the patient, which is often not possible in the emergency department.
Regular monitoring: Ongoing care allows for regular monitoring of the disease, which can help in early detection of complications timely intervention.
Preventive measures: Specialists can implement preventive measures to reduce the risk of complications and improve the overall quality of life for patients.
Proactive management: Effective management of rare diseases through specialized care can reduce the frequency of emergency department visits, which are often reactive and not tailored to the specific needs of rare disease patients.
Better outcomes: Patients receiving regular, specialized care are more likely to experience better health outcomes and fewer emergencies.
Support networks: Quality care often includes access to support groups and counseling services, which can provide emotional and psychological support for patients and their families.
Patient education: Specialists can educate patients and their families about the disease, treatment options, and self-care strategies, empowering them to better manage the condition.
Cutting-edge treatments: Specialized centers often have access to the latest research and clinical trials, offering patients opportunities to participate in studies that may provide new treatment options.
Innovative therapies: Patients may benefit from innovative therapies and treatments that are not available in general healthcare settings.
Creating a Care Team For Your RRP Treatment
Compiling a care team for Recurrent Respiratory Papillomatosis patients involves assembling a team of healthcare professionals with diverse expertise to provide comprehensive care.
With a rare disease, and especially one which requires a multidisciplinary and specialized approach, quality care is essential.
With treatment from a trained a qualified specialist, patient outcomes are improved, and less frequent intervention is necessary. RRPF encourages patients to reach out if you need help locating clinicians who are knowledgeable and up to date in their treatment of RRP patients.
Here’s a guide to help you build an effective multidisciplinary care team:
Primary Care Physician (PCP)
Role: Acts as the central coordinator of care, managing overall health and making referrals to specialists as needed.
Responsibilities: Regular check-ups, monitoring general health, and coordinating with other team members.
Otolaryngologist (ENT specialist)
Role: Specializes in ear, nose, and throat disorders, including surgical removal of papillomas.
Responsibilities: Performing surgeries, managing airway obstructions, providing ongoing ENT care.
Pulmonologist
Role: Focuses on respiratory health, particularly important if RRP affects the lower respiratory tract.
Responsibilities: Monitoring lung function, • managing respiratory symptoms, and providing treatments for airway management.
Speech-language pathologist
Role: Helps with voice and speech issues that may arise due to RRP.
Responsibilities: Providing voice therapy, teaching techniques to improve vocal function, and offering support for communication challenges.
Infectious disease specialist
Role: Manages infections and provides expertise on antiviral treatments.
Responsibilities: Advising on antiviral medications and monitoring for any infections related to RRP.
Oncologist
Role: Provides expertise in managing any potential malignant transformation of papillomas.
Responsibilities: Monitoring for signs of cancer and providing appropriate treatments if necessary.
Psychologist or psychiatrist
Role: Offers mental health support to help cope with the chronic nature of RRP.
Responsibilities: Providing counseling, managing anxiety or depression, and offering strategies for mental well-being.
Nutritionist or dietitian
Role: Ensures the patient maintains a healthy diet to support overall health and recovery.
Responsibilities: Creating nutrition plans, advising on dietary supplements and monitoring nutritional status.
Social worker
Role: Provides support with navigating healthcare systems and accessing resources.
Responsibilities: Assisting with insurance issues, connecting with support groups, and providing emotional support.
Patient advocate
Role: Helps patients understand their rights and navigate the healthcare system.
Responsibilities: Advocating for the patient’s needs, assisting with insurance claims, and providing information on available resources.
Resources
Introduction to Guiding Principles for Interprofessional Collaboration→
https://interactives.commonwealthfund.org/2017/ july/mirror-mirror→
Journal of Rehabilitation Medicine – Multidisciplinary team care in…→
Medications for Treatment-Resistant Depression in Adults – AAFP→
Core Competencies for Interprofessional Collaborative Practice→
Core Competencies for Interprofessional Collaborative Practice→
How to Create Your RRP Care Team
Creating a care team for Recurrent Respiratory Papillomatosis patients involves assembling a group of healthcare professionals with diverse expertise to provide comprehensive and coordinated care.
Your Step-by-Step Guide
Define roles: Clearly outline the roles and responsibilities of each team member to avoid overlap and ensure comprehensive care.
Communication protocols: Establish protocols for regular communication among team members, including scheduled meetings and updates.
Individualized care plan: Create a care plan tailored to specific needs, including treatment goals, interventions, and follow-up schedules.
Patient involvement: Involve family in the care planning process to ensure their preferences and values are considered.
Scheduled check-Ins: Regularly scheduled appointments with each specialist to monitor progress and adjust the care plan as needed.
Symptom tracking: Keep a symptom diary to help track changes and identify patterns.
Team meetings: Hold regular team meetings to discuss progress, share insights, and coordinate care.
Shared documentation: Use a shared electronic health record (EHR) system to ensure all team members have access to up-to-date patient information.
Patient education: Provide educational materials about RRP, treatment options, and self-care strategies.
Support groups: Connect the patient with support groups for emotional support and practical advice from others with similar experiences.
Continuous improvement: Regularly evaluate the effectiveness of the care plan and make adjustments based on the patient’s needs and feedback.
Patient feedback: Encourage the patient to provide feedback on their care experience to help improve the care team’s approach.
Keeping and Organizing Medical Records and History
Working with a multidisciplinary team requires patients to track an enormous amount of information across multiple visits and treatments.
It can be difficult to remember every detail, and even more challenging when physicians use different records management software. This can be greatly improved by taking a few steps to organize information pertinent to your diagnosis and make it easily accessible for new appointments, insurance inquiries, or other uses.
Benefits of Properly Keeping Records
Accurate information: Having a comprehensive and organized medical history allows healthcare providers to make more informed decisions, leading to better diagnosis and treatment.
Emergency situations: In emergencies, having quick access to your medical records can be life-saving, enabling healthcare providers to understand your medical background and provide appropriate care promptly.
Efficiency: Organized records help avoid unnecessary duplicate tests and procedures, saving time and reducing healthcare costs.
Consistency: Ensures that all healthcare providers have access to the same information, leading to consistent and coordinated care.
Tracking progress: Keeping a record of symptoms, treatments, and test results helps in tracking the progress of chronic conditions and adjusting treatments as needed.
Informed decisions: Patients can make more informed decisions about their health and treatment options when they have a clear understanding of their medical history.
Ease of access: When seeking a second opinion or changing doctors, having organized medical records makes it easier to provide new healthcare providers with the necessary information.
Comprehensive overview: Ensures that new doctors have a complete picture of your medical history, leading to better continuity of care.
Insurance claims: Organized records can simplify the process of filing insurance claims and appealing denials.
Legal documentation: Having a clear record of medical history can be important for legal purposes, such as in cases of medical malpractice or disability claims.
Patient empowerment: Being organized and informed about your medical history empower you to take an active role in your healthcare.
Advocacy: Helps you advocate for yourself or a loved one more effectively, ensuring that healthcare providers understand and address your needs.
Staying Organized: Online Tools for Managing Your Medical Journey
Keeping track of procedures, symptoms, test results, and appointments can feel overwhelming. It’s important to know which tools are available and how you can put them to work.
Benefits of Properly Keeping Records
MyChart: A widely used PHR that allows you to access your health information, schedule appointments, and communicate with your healthcare team.
HealthVault: A Microsoft service that helps you store and manage your health information securely.
Apple Health: Integrates with your iPhone to collect and organize health data from various sources, including medical records, fitness apps, and wearable devices.
CareZone: Helps you manage medications, track health metrics, and store medical information. It also offers features like medication reminders and a journal for symptoms.
My Medical: An app that allows you to store, manage, and share your medical records securely. It supports multiple profiles, making it useful for families.
Medisafe: Primarily a medication management app, but it also allows you to store medical records and track health metrics.
Google Drive: You can create folders to organize your medical records and share them with healthcare providers as needed.
Dropbox: Another cloud storage option that allows you to store and organize your medical records securely.
Zocdoc: While primarily a platform for booking medical appointments, Zocdoc also offers features for organizing and managing your medical records.
Considerations for Choosing Tools
Security: Ensure the tool complies with privacy regulations like HIPAA to protect your personal health information.
Ease of use: Choose a tool that is user-friendly and fits your tech comfort level.
Integration: Look for tools that can integrate with other health apps and devices you use.
Resources
How can Digital Tools Help Me Manage My Health Information? | HealthIT.gov→
A Guide to Organizing Your Medical Records – Guides – Zocdoc→
What is the best way to organize medical records? – ScribeMedics→
4 Top Medical Records Apps to Manage Your Healthcare (Apple and Android)→
Medical Records: Getting Organized – Johns Hopkins Medicine→
Living With RRP: Support for Students, Parents, and Adults
Navigating life with RRP can present unique challenges, especially in school and the workplace.
Resources for Students at School
Rare Disease Day School Toolkit: This toolkit offers lesson plans, stories, and activities to help explain rare diseases to children and teenagers. It includes resources for different age groups and is available in multiple languages.
Global Genes Educational Advocacy Toolkit: This guide provides tips and strategies for advocating for children with rare diseases in educational settings. It covers specialized education support and ways to work with school staff.
NORD Students for Rare: This program by the National Organization for Rare Disorders unites high school and college students to spread awareness of rare diseases. It offers networking opportunities, educational resources, and leadership experiences.
Resources for Parents of Students
Center for Parent Information & Resource: Supports, Modifications, and Accommodations: This resource provides detailed information on different types of supports and accommodations that can be made in the classroom. It includes practical tips for parents and educators to ensure that students receive the necessary adaptations.
Selective Mutism Association: Toolkit for Educators: Although focused on selective mutism, this toolkit offers comprehensive strategies for communicating with school personnel, developing 504/IEP plans, and implementing school interventions. It can be adapted for other conditions.
Understood: Common Classroom Accommodations and Modifications: This resource lists common accommodations and modifications that can be discussed with schools. It provides examples and practical advice for implementing these changes.
Inclusive Schools Network: Accommodations in the Classroom – A Guide to Making Them Real: This guide breaks down typical accommodations and provides tools for practical implementation. It’s a valuable resource for teachers and parents working together to support students.
AAP: Supporting Students with ADHD: While focused on ADHD, this resource offers insights into creating effective communication logs and behavior report cards, which can be adapted for other conditions.
There are several tools that schools offer to support students with unique learning needs. Below we have listed a few resources to help you navigate what can be offered.
Individualized Education Plans (IEPs): Work with school staff to develop an IEP tailored to the student’s specific needs. This plan can include accommodations, modifications, and support services.
504 plans: For students who do not qualify for an IEP, a 504 Plan can provide accommodations to ensure they have equal access to education.
Health care plans: Develop a health care plan with the school nurse to manage the student’s medical needs during school hours.
Support groups: Connect with local or online support groups for families dealing with rare diseases. These groups can provide emotional support and practical advice.
Educational workshops: Attend workshops and conferences focused on rare diseases and educational advocacy. These events can offer valuable insights and resources.
Regular meetings: Schedule regular meetings with teachers, school counselors, and healthcare providers to discuss the student’s progress and any necessary adjustments.
Awareness campaigns: Organize awareness campaigns at school to educate peers and staff about rare diseases, promoting empathy and understanding.
Resources for Adults in the Workplace
Requesting accommodations for rare diseases at work involves understanding your rights and effectively communicating your needs to your employer. Here’s a step-by-step guide to help you through the process:
Americans with Disabilities Act: The ADA protects employees with disabilities, including those with rare diseases, from discrimination and ensures they have the right to reasonable accommodations.
Reasonable accommodations: These are adjustments or modifications that enable you to perform your job duties. They must be feasible and not cause undue hardship to the employer.
Assess your condition: Understand how your rare disease affects your ability to work. Identify specific tasks or aspects of your job that are challenging.
Consult your doctor: Get a detailed medical report from your healthcare provider outlining your condition and the accommodations that would help you perform your job effectively.
Document your needs: Write down the accommodations you need. Be specific about how these adjustments will help you perform your job.
Use plain language: You don’t need to use legal jargon. Simply explain that you need an adjustment or change at work due to a medical condition.
Follow company procedures: Check your company’s policy on requesting accommodations. This information is often available through the Human Resources department.
Submit in writing: While verbal requests are valid, submitting a written request can provide a clear record. Include your medical documentation and a detailed explanation of your needs.
Collaborate with your employer: Engage in an open dialogue with your employer to discuss your request. Be prepared to discuss alternative accommodations if your initial request is not feasible.
Be flexible: Understand that the process may involve some negotiation to find a mutually acceptable solution.
Monitor implementation: Once accommodations are granted, ensure they are implemented correctly and effectively.
Provide feedback: If the accommodations are not working as expected, communicate with your employer to make necessary adjustments.
Job Accommodation Network: Offers guidance on requesting and negotiating accommodations.
Family and Medical Leave Act (FMLA): Provides eligible employees with up to 12 weeks of unpaid leave for serious health conditions.
By understanding your rights and effectively communicating your needs, you can create a supportive work environment that accommodates your rare disease. If you need further assistance, organizations like JAN and the EEOC provide valuable resources and support.
Resources
Workplace accommodations for the immunocompromised as pandemic wanes→
Chronic Disease and Work: How to Get the Workplace Accommodations You Need→
Employees’ Practical Guide to Requesting and Negotiating Reasonable Accommodation Under the Americans with Disabilities Act→
Working Rare: Employment Considerations for People Living with Rare Diseases→
Work participation in adults with rare genetic diseases – a scoping review→
Insurance Basics for Rare Disease Patients
Navigating health insurance can be particularly challenging for patients with rare diseases.
Many of our patients may have multiple diagnoses and pre-existing conditions, which further complicate insurance claims.
Coverage details: Thoroughly review your insurance policy to understand what is covered, especially regarding rare diseases and experimental treatments.
Pre-existing conditions: Under the Affordable Care Act, insurance plans cannot deny coverage based on pre-existing conditions, including rare diseases.
Employer-sponsored insurance: Many people get their insurance through their employer. Check with your HR department for details on coverage and any additional benefits.
Medicaid: This is a state and federal program that provides health coverage for low-income individuals. Eligibility and benefits can vary by state.
Medicare: Available for people over 65 or those with certain disabilities. Medicare Part D covers prescription drugs, which can be crucial for managing rare diseases.
ACA Marketplace plans: These plans are available through the Health Insurance Marketplace and offer various levels of coverage. Subsidies may be available based on income.
Patient assistance programs: Organizations like the National Organization for Rare Disorders offer programs to help with medication costs, insurance premiums, and co-pays.
Non-profit organizations: Many non-profits provide financial assistance for specific rare diseases. They can help with costs related to treatment, travel, and other medical expenses.
Patient advocates: These professionals can help you navigate the complexities of insurance, find financial assistance, and connect with support networks.
Support groups: Joining a support group for your specific rare disease can provide emotional support and practical advice from others who understand your situation.
Global genes toolkit: This toolkit offers comprehensive information on navigating health insurance for rare disease patients.
GoodRx: Provides information on finding affordable health insurance and other support after a rare disease diagnosis.
Understanding the Basics: A Simple Glossary of Insurance Terms
Health insurance can be confusing. This glossary breaks down common insurance terms into plain language so you can better understand.
Accident: An unforeseen and unintended event causing loss or injury.
Accidental death benefit: An additional benefit paid if the insured dies because of an accident.
Actual cash value: The value of your property, based on the current cost to replace it minus depreciation.
Beneficiary: The person or entity designated to receive the proceeds from an insurance policy.
Binder: A temporary insurance contract that provides proof of coverage until a permanent policy is issued.
Claim: A request made by the insured to the insurance company for payment of benefits under a policy.
Co-payment (co-pay): A fixed amount paid by the insured for covered services, typically at the time of service.
Deductible: The amount the insured must pay out-of-pocket before the insurance company pays a claim.
Dependent: A person, usually a family member, who relies on the policyholder for financial support and is covered under their insurance policy.
Exclusion: Specific conditions or circumstances for which the policy does not provide coverage.
Endorsement: An amendment or addition to an existing insurance policy that changes the terms or scope of the original policy.
Face amount: The amount of coverage provided by a life insurance policy, payable upon death of the insured.
First-party claim: A claim filed by the policyholder against their own insurance policy.
Grace period: The period after the premium due date during which the policyholder can pay without losing coverage.
Hazard: A condition that increases the likelihood or severity of a loss.
Health Maintenance Organization (HMO): A type of health insurance plan that requires members to use a network of doctors and hospitals.
Indemnity: Compensation for a loss or damage, restoring the insured to their financial position before the loss.
Insurable interest: The financial interest an insured has in the insured property or person.
Liability insurance: Coverage that protects against claims alleging that the insured’s negligence or inappropriate action resulted in bodily injury or property damage to another party.
Premium: The amount paid by the policyholder to the insurance company for coverage.
Policyholder: The person or entity that owns the insurance policy.
Rider: An add-on to an insurance policy that provides additional benefits or coverage.
Subrogation: The process by which an insurance company seeks reimbursement from the responsible party for a claim it has already paid.
Underwriting: The process by which an insurance company evaluates the risk of insuring a person or asset and determines the premium.
Waiting period: The time that must pass before some or all coverage begins.
Appealing an Insurance Decision
Carefully read the denial letter from your insurance company.
It should explain why your claim was denied and provide information on how to appeal. If you wish to appeal, there are steps you can take.
Your Step-by-Step Guide
Identify the reason: Common reasons for denial include lack of medical necessity, out-ofnetwork provider, or missing information.
Collect documentation: Gather all relevant documents, including medical records, doctor’s notes, and the Explanation of Benefits (EOB) from your insurer.
Request your claim file: Ask your insurance company for a copy of your claim file, which includes all the information they used to make their decision.
Internal appeal: Write an appeal letter to your insurance company. Include:
Your personal information (name, policy number, claim number).
A clear statement that you are appealing the denial.
Detailed reasons why you believe the claim should be covered, supported by medical records and a letter from your doctor.
External review: If the internal appeal is denied, you can request an external review by an independent third party. This review is binding and the insurance company must accept the decision.
Follow instructions: Submit your appeal according to the instructions provided in the denial letter. Ensure you meet any deadlines and include all required documentation.
Keep copies: Make copies of everything you send for your records.
Check status: Regularly check the status of your appeal with your insurance company. Keep a record of all communications.
Be persistent: If your appeal is denied, you may have additional options, such as filing a complaint with your state insurance commissioner.
Patient Advocate Foundation: Offers resources and support for appealing insurance denials.
Healthcare.gov: Provides detailed information on the appeals process and your rights.
Appealing an insurance denial can be time-consuming but being organized and persistent can increase your chances of success. If you need more specific guidance, consider reaching out to a patient advocate or legal advisor.
Resources for Help with Insurance Issues
There are several non-profit organizations that provide resources and assistance for patients dealing with insurance claims.
Patient Advocate Foundation: PAF offers case management services, co-pay relief programs, and educational resources to help patients navigate complex healthcare challenges and insurance issues.
PAN Foundation: Provides financial assistance to underinsured patients for out-of-pocket costs, including medications and treatments for over 80 diseases and chronic illnesses.
CMS Patient Advocate Resources: The Centers for Medicare & Medicaid Services offers information on finding patient advocates who can help with medical bills and insurance claims.
Global Genes: Provides resources and support for patients with rare diseases, including assistance with insurance claims and navigating healthcare systems.
GNA Now: Connects patients with healthcare advocates who can manage care, ensure hospital responsiveness, and oversee insurance and billing issues. These organizations can provide valuable support and resources to help you manage insurance claims and navigate the healthcare system. If you need more specific information or assistance, visiting their websites or contacting them directly can be very helpful.
Mental Health and Recurrent Respiratory Papillomatosis
When you have been diagnosed with RRP, it impacts more than just your physical health.
Between the unpredictability of future surgeries, voice changes or loss, as well as missing school, work, and social events due to treatment, it is no wonder that RRP can lead to new struggles with mental health or worsen existing conditions.
95%
of RRP patients avoided participating in social and/or career activities due to concerns over their voice quality
66%
of patients reported that they missed at least 5 days of work each month due to RRP
58%
of polled RRP patients stated that they paid at least 5% of their annual salary towards RRP-related medical care.
80%
of RRP Patients reported social anxiety.
What are normal emotions in RRP?
It is normal to have all kinds of emotions with a RRP diagnosis:
Sadness
Fear
Anxiety
Anger
Guilt
Disappointment
Loneliness
Numbness
All these emotions are part of a natural, expected response to a big life change. There’s nothing wrong with you if you feel any or all these emotions! They are part of the full range of human emotions that we are all supposed to and allowed to feel, so it is important that you give yourself permission to feel them. Your feelings may change each week, day or even each minute.
Relationships and RRP
RRP can have a huge impact on all important relationships in your life. Relying on others for support, even family, may lead to feelings of guilt. Sometimes family roles and dynamics need to change, which impacts parents, siblings and extended family.
Friends may not know what to say about your diagnosis, so they may say the wrong thing, give unsolicited advice, or say nothing at all. This comes from their own ignorance or fear of things they do not understand. You may worry that friends will pull away if you are no longer able to spend the same amount of time with them as before.
Grief and RRP
Being diagnosed with RRP is a type of loss and needs to be grieved and mourned in the same way as when we lose someone we love. In addition to losing your health, there are many other possible losses to grieve: your sense of safety, how you would like to look or speak, how you would like to spend your time, your ability to go to school or work the same as before, loss of finances, and many more.
These losses are not easily noticed or understood by family and friends, so there is less support to help with the grief.
Trauma and RRP
When you think of trauma, you may initially think of soldiers, war and violence. But our brains can develop the same reaction in response to any event that they read as traumatic, such as learning you have RRP, long hospital stays, multiple surgeries and fear of the need for future surgeries. Studies report that 12-25% of people who go through a life-threatening medical event develop medical or illness-induced PTSD
Unlike traditional PTSD, where the triggers are in the outside world, in medical PTSD, the triggers can be internal, including physical symptoms of RRP that we cannot avoid. Other medical triggers, like doctor’s visits and hospital stays, may also be unavoidable. We have no choice over how our brains read these events, and whether our brains see these events as traumatic.
Experiencing trauma can lead to nightmares and flashbacks, wanting to avoid certain places or things, feeling always on guard, and intense negative emotions or numbness.
Unique Challenges of Adult Onset RRP
When you are diagnosed with RRP as an adult, one of the greatest challenges can be that you remember and miss your adult life before your diagnosis. It is hard to grieve a self that no longer exists- our culture does not have any good vocabulary or ritual for this type of loss. Not only are you grieving who you used to be, but you may also need to grieve the healthy future version of yourself that you hoped to become. You may also see that your loved ones and family are grieving that version of you.
As an adult, you may be balancing your chronic illness with work. If your RRP does not affect your ability to perform your daily job, you are not required to inform your company. However, there are several laws in place to help you stay at work. The Americans with Disabilities Act requires your workplace to provide “reasonable accommodations” at work. The Family and Medical Leave Act protects your job if you need to take a longer leave due to health reasons.
Unique Challenges of Juvenile Onset RRP
When RRP is diagnosed in childhood, it becomes a family-focused disease, since the child needs so much support in managing their illness. Parents and family must find a healthy balance between giving their children some independence and keeping them safe. This can sometimes complicate the transition into independent adulthood and be hard during teenage years when teenagers naturally seek out independence through pushing boundaries. Parents may also need to balance giving attention to healthy siblings as well.
Teenagers tend to act out or react with anger when they face big life changes and teenagers with RRP is no exception. They may use alcohol and drugs to cope with and avoid scary emotions, as well as fit in with peers. It is important for parents to listen without trying to minimize, avoid or problemsolve your child’s tough feelings – it is normal and healthy for them to have challenging feelings too.
If your child is having trouble with school due to RRP symptoms or treatment, talk to their school about a 504 plan or an IEP plan.
504 plans set up accommodations at school and IEPS (Individual Education Programs) can allow for changes to the workload, attendance and adjusted school days.
What’s not helpful for coping?
While certain coping strategies can be useful in specific situations, they aren’t always effective or appropriate for every circumstance.
These include distracting ourselves with phones or TV, avoiding our thoughts and feelings, overeating or impulse shopping, trying to “think positive” and isolating ourselves from others.
Other things are never helpful and can make our mental health worse: being mean or hard on ourselves, comparing ourselves to others, excess alcohol use and drug use. These unhelpful coping skills get in the way of you feeling your emotions and lead can lead to guilt and regret on top of the emotion that you are avoiding.
What is helpful for coping?
The key with the following coping skills is that begin to allow your challenging emotions and thoughts instead of distracting or avoiding them.
Practice sitting with your tough emotions: You can start small (even one minute), give yourself permission to sit with your emotions and thoughts. Set a timer and when it goes off, give yourself permission to go back to your distraction and avoidance until the next day.
Tip: If you have trouble getting in touch with your emotions at all, music can help!
Try journaling: Set aside some time to write out your thoughts and feelings. Don’t treat this like a diary to recount the events of the day. Instead, try to write all the things that you don’t feel like you can say out loud, so that they are let out.
Tip: At the end, feel free to tear up your piece of paper if you don’t want anyone to find it.
Practice self-compassion: For some reason, we aren’t always good at being kind to ourselves. Try talking to yourself like you would a friend and notice how much kinder and supportive you are. Next time you notice yourself being harsh on yourself, try saying to yourself something kind and simple, such as “This is really hard”.
Tip: You don’t have to talk to yourself out loud. This can all be done in your head.
Tip: Make changes to this practice until it feels natural to you. Maybe try putting a hand over your heart, closing your eyes or incorporating some deep breaths.
Join a support group: There is a lot of power in talking to someone else who has had a similar experience to you. There are certain things that you don’t have to explain because they already understand. Support groups can offer a place to share your thoughts and feelings and help you feel less alone.
Tip: RRPF has a Facebook Support Group.
What is more help needed?
If you are having problems allowing your emotions or feel that your emotions are getting in the way of your daily life, it may be beneficial to seek out professional help. In general, there is no bad time to seek counseling for a stressful situation.
It is not a sign of weakness or a lack of faith to ask for help!
In therapy, a professional, licensed therapist will get to know you and your experience. They will work with you to create a plan based on what you want to work on and change. Just having a neutral third party hear your fears and struggles is immensely helpful.
Therapy is covered by insurance. You can find a provider through your insurance’s website, a Google search or through an online directory such as Psychology Today. It may be helpful to look for a provider who specializes in chronic illness.
What if I'm a caregiver or parent of someone with RRP?
Caregivers of RRP patients also experience stress, uncertainty and can feel overwhelmed. Most of the same tips above for managing mental health also apply to caregivers. Caregiver burnout can lead to impatience, frustration and even anger.
Parents are always worried about their kids, but watching them have RRP can make that worry get even worse. Taking good care of yourself and your mental health will help you be a better caregiver in the long run.
Mental Health Resources
National Institute on Mental Health Hotline: 1-800-950-NAMI (6264), text “Helpline” to 62640. Available Monday-Friday 10AM-10PM ET. They also have a Teen and Young Adult Hotline that can be reached at the same number or by texting “Friend” to 62640. This will connect you with other young people who have had similar experiences.
Suicide Prevention Hotline: 988. Available 24/7.
Psychology Today: www.psychologytoday.com Psychology Today is a website that allows you to search therapists by insurance, specialty and location.
Open Path: https://openpathcollective.org Open Path offers discounted therapy services to those in need.
Books for Adults on coping with a Chronic Illness:
What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt by Tessa Miller
You Don’t Look Sick!: Living Well with Invisible Chronic Illness by Joy Selak and Dr. Steven Overman
Part of You, Not All of You: Shared Wisdom and Guided Journaling for Life with Chronic Illness by Jenneh Rishe
The Invisible Kingdom: Reimagining Chronic Illness by Megan O’Rourke
Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties by Laurie Edwards
The Things We Don’t Say: An Anthology of Chronic Illness Truths by Julie Morgenlender
Books for Children on Chronic Illness and Big Feelings:
Little Tree: A Story for Children with Serious Medical Illness by Joyce C. Mills
Tiger Livy by Erin Garcia and Betsy Miller
Big Tree is Sick: A Story to Help Children Cope with the Serious Illness of a Loved One by Nathalie Slosse
When Someone I love Doesn’t Feel Good by Sara Olsher • How Do You Care for a Very Sick Bear? By Vanessa Bayer
Thank you Mind: Understanding My Big Feelings on Tricky Days by Jennifer Cohen Harper
My Body Sends a Signal: Helping Kids Recognize Emotions and Express Feelings by Natalia Maguire
Listening to My Body: A Guide to Helping Kids Understand the Connection Between Their Sensations (what the heck are those?) and Feelings So That They Can Get Better At Figuring Out What They Need by Gabi Garcia
References
So, R.J., McClellan, K. and Best, S.R. (2023), Recurrent Respiratory Papillomatosis: Quality of Life Data from an International Patient Registry. The Laryngoscope, 133: 1919-1926. https://doi.org/10.1002/ lary.30401
Edmondson, D. (2014). An enduring somatic threat model of posttraumatic stress disorder due to acute life-threatening medical events. Soc. Personal Pscyhol. Compass, 8(3), 118-134.