Pyoderma Gangrenosum (PG) is a rare skin condition that causes painful, rapidly growing ulcers. It affects about 6 people per million each year. The condition is linked to genetic mutations, problems with neutrophils (a type of white blood cell), and abnormal inflammation.
Key Points:
Misdiagnosis and Delayed Diagnosis: PG is often misdiagnosed, leading to prolonged suffering, increased healthcare use, and missed work. Diagnosis can take a long time, with many patients needing multiple treatments over about 12 months to heal.
Comorbid Conditions: Around 50% of PG cases occur alongside other conditions like inflammatory bowel disease, rheumatoid arthritis, lupus, hidradenitis suppurativa, vasculitis, and blood disorders.
Diagnostic Challenges: PG is often misdiagnosed due to its rarity and lack of awareness among patients and healthcare providers. More than 40% of cases are diagnosed after multiple incorrect diagnoses.
Impact on Healthcare: Delayed diagnosis leads to more emergency department visits and hospitalizations, with higher costs for PG patients compared to others. Increasing awareness and training for timely recognition of PG is crucial.
Underserved Populations: People in underserved communities face barriers like internet access, technology, proximity to care, and additional challenges for older adults. Many patients travel long distances for medical care, which can be difficult due to work, childcare, mobility needs, or financial concerns.
All Things PG aims to improve diagnosis and awareness of PG, especially for underserved populations.
Goals
Education: Develop resources and a website for providers, patients, and caregivers. Host Patient Symposia and other online events for learning, networking, surveys, and practical wound care training.
Community Building: The initiative aims to create a supportive community around PG, improving understanding and access to care, similar to successful efforts for breast cancer and other conditions.
Fundraising: Raise funds and request in kind contributions to distribute wound care supplies
Leadership and Sponsorship: Led by patients, family members, medical providers, and physicians and staff at Oregon Health and Science University (OHSU).
Benefits: Efficient planning, better understanding between patients and clinicians, effective referral networks, and creative solutions to challenges
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