πŸŽ—οΈ BII Awareness Hub

Education β€’ Testing Guides β€’ Advocacy β€’ Community for Breast Implant Illness (BII/ASIA)

Welcome to the BII Awareness Hub

This is a resource hub for women, families, and healthcare providers seeking evidence-based information about breast implant illness (BII) and autoimmune/autoinflammatory syndrome induced by adjuvants (ASIA).

Created by and for breast implant survivors, with science-backed content.

πŸ“š Understand BII

Learn what BII/ASIA is, how silicone implants trigger immune reactions, and why symptoms vary.

🩺 Testing Checklist

Download a doctor's visit checklist with labs, imaging, and specialist referrals based on latest research.

🀝 Connect & Share

Find support groups, read survivor stories, and join the advocacy movement for informed consent and safety.

⚠️ This is NOT medical advice. Always consult with your healthcare provider. This hub provides educational information based on peer-reviewed research and expert consensus to help you ask informed questions.

Quick Facts

The Science Behind BII/ASIA

Key Finding: The 2022 Expert Review of Clinical Immunology (Cohen Tervaert et al.) using Bradford Hill causality criteria confirmed that silicone breast implants can causally trigger BII/ASIA in susceptible individuals.

How Silicone Triggers Immune Reactions

Silicone breast implants trigger a chronic inflammatory response through several mechanisms:

  1. Adjuvant Effect: Silicone acts as an "adjuvant" β€” a substance that enhances immune responses in genetically/immunologically susceptible people.
  2. Mast Cell Activation: Implantation triggers mast cells and macrophages to produce inflammatory cytokines (IL-1Ξ², IL-6, IL-17, TNF-Ξ±).
  3. Gel Bleed & Migration: Silicone particles migrate through the capsule and reach lymph nodes and distant organs, triggering granulomatous inflammation.
  4. NALP3 Inflammasome: Silicone activates the NALP3 inflammasome pathway, driving ongoing inflammation and autoantibody production.
  5. Biofilm Formation: Bacteria (like Propionibacterium acnes) can colonize implants and amplify inflammation.
  6. T Cell Memory: Once activated, immune cells create "memory" of the silicone exposure, leading to chronic symptoms even after implant stabilization.

Result: Chronic fatigue, autoimmunity, and systemic symptoms in susceptible women.

What is ASIA?

ASIA = Autoimmune/Autoinflammatory Syndrome Induced by Adjuvants (also called "silicone incompatibility syndrome" or BII in the US)

Defined in 2011 by Shoenfeld, ASIA describes a syndrome where an implanted medical device or adjuvant (silicone, aluminum, polypropylene mesh, etc.) triggers autoimmune disease in susceptible individuals.

ASIA Diagnostic Criteria (needs 1 major + 2 minor, or 2 major):

~95% of self-reported BII patients meet ASIA criteria.

Key Research Findings

Finding Source / Data
45% increased risk of autoimmune disease in women with implants Watad et al. 2018 meta-analysis (24,651 women with implants vs. 98,604 matched controls)
~25% of unselected implant patients have ASIA symptoms Cohen Tervaert pilot study (4x higher than healthy controls)
60–80% show symptom improvement after explant Multiple cohort studies including Cohen Tervaert 2022
90% of BII patients meet CFS/ME criteria Cohen Tervaert 2022 Expert Review
90% of BII patients meet fibromyalgia criteria Cohen Tervaert 2022 Expert Review
BIA-ALCL (anaplastic large cell lymphoma) risk: 1 in 2,832 women van der Meulen et al. 2018 (macrotextured implants especially)

Most Common Autoimmune Diseases in BII Patients:

  • SjΓΆgren's Syndrome – highest association (dry eyes, dry mouth, antiSSA/SSB negative in 80%)
  • Systemic Sclerosis – skin thickening, Raynaud's, esophageal reflux
  • Rheumatoid Arthritis – symmetric polyarthritis
  • Sarcoidosis – granulomatous inflammation in lymph nodes, lungs
  • Systemic Lupus Erythematosus (SLE)-like – ANA+, but usually seronegative for classic anti-dsDNA
  • Fibromyalgia – widespread pain (up to 90% of BII patients)
  • Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) – post-exertional malaise (up to 90%)

Autoimmune Disease & BII: What's the Connection?

Silicone implants do NOT cause classic autoimmune disease in all women. Rather, in genetically/immunologically susceptible women, silicone acts as a "trigger."

Risk Factors for Developing BII/ASIA:

  • History of allergies
  • Existing autoimmune disease
  • Family history of autoimmune disease
  • Smoking
  • Obesity
  • HLA genotype (immunogenetic factors)
  • Vitamin D deficiency

Bottom line: Not all women with implants develop BII, but those with genetic predisposition, immune dysregulation, or allergic history are at higher risk. Silicone is not "toxic to everyone"β€”it is an adjuvant problem in susceptible individuals.

BII/ASIA Symptoms Explained

Important: No single symptom is unique to BII. Women and doctors should consider the constellation of symptoms + timeline relative to implant surgery + improvement after explant.

Systemic Symptoms (Most Common)

1. Chronic Fatigue (90%+ of BII patients)

Characteristic features:

  • Severe fatigue on waking (not improved by rest)
  • Post-exertional malaise: symptom crash 12–72 hours after physical or cognitive exertion
  • Substantially reduced ability to work, study, socialize
  • Sleep unrefreshing (90% of patients have sleep disturbances)

2. Arthralgia & Myalgia (Joint & Muscle Pain) (80–90%)

  • Symmetric polyarthritis (multiple joints, both sides)
  • Severe muscle pain and weakness (53% have abnormal EMG patterns)
  • Morning stiffness lasting >1 hour
  • Muscle weakness can be severe; some women report being bedridden

3. Cognitive Dysfunction ("Brain Fog") (80–90%)

  • Memory problems ("Alzheimer-light")
  • Word-finding difficulties
  • Poor concentration and attention span
  • Absent-mindedness

4. Sicca Symptoms (Dry Eyes & Mouth) (75%)

  • Severe dry eyes and blurred vision
  • Dry mouth with swallowing difficulty and dental problems
  • Objective findings: abnormal Schirmer's test, keratitis sicca
  • Differs from SjΓΆgren's: Negative anti-SSA/SSB antibodies in 80% of BII patients

5. Fever & Night Sweats (60–70%)

  • Persistent low-grade fever feeling (subjective)
  • Profuse night sweats
  • Some women have elevated ferritin levels meeting criteria for Still's disease

6. Rashes & Skin Issues (20–40%)

  • Ill-defined rashes
  • Severe itching (pruritus)
  • Hair loss (alopecia)
  • Livedo reticularis (lacy, mottled skin pattern; 50–70% of patients)

7. Immune Dysfunction (20–40%)

  • Recurrent infections (upper respiratory, sinus)
  • Hypogammaglobulinemia (low immunoglobulins, especially IgG2 subclass)
  • Enlarged lymph nodes (axillary, cervical, inguinal; 70–80%)
  • Low natural killer cell activity

8. Allergies & Atopic Symptoms (50–80%)

  • Often worsening after implant surgery
  • Common: pollen, pet, mold, latex, food allergies
  • Metal allergy: ~50% develop nickel allergy
  • Symptoms: sneezing, runny nose, itchy eyes, nasal congestion

Local Breast Symptoms

  • Breast pain, tenderness, burning (~50% of BII patients)
  • Changes in breast shape, symmetry, firmness, size
  • Symptoms triggered or worsened by:
    • Trauma to breasts
    • Mammography compression

Neurologic Manifestations (30–40%)

  • Ischemic cerebral disease / stroke-like events
  • Multiple sclerosis-like symptoms (demyelinating disease patterns)
  • Small-fiber neuropathy: burning, tingling, "pins and needles" sensations in extremities
  • Headaches (often severe and frequent)
  • Seronegative antiphospholipid syndrome: clotting risk without classic antibodies

Vascular & Cardiac Symptoms

  • Raynaud's phenomenon: 30–50% of patients; color changes in fingers with cold exposure
  • Nailfold capillaroscopy abnormalities: suggestive of systemic sclerosis spectrum
  • POTS (Postural Orthostatic Tachycardia Syndrome): dizziness, irregular heartbeat, heart rate spike on standing
  • Mitral valve prolapse & joint hypermobility: ~50% of patients
  • Chest pain / palpitations
  • Increased cardiovascular disease risk: 6.55% in implant group vs. 5.64% in non-implant group

Symptom Timeline

In studies, the median time between implant surgery and onset of BII symptoms is:

10 years (range: 2–24 years)

This highlights why many women don't initially connect implants to later-onset systemic illness.

Common Patterns:

  • Early phase (0–2 years): Local symptoms (pain, swelling, capsular hardness)
  • Intermediate phase (2–10 years): Insidious onset of fatigue, joint pain, cognitive issues
  • Advanced phase (10+ years): Progressive systemic autoimmune disease (SjΓΆgren's, sclerosis, lupus-like), neurologic issues, malignancy risk

Doctor's Visit: BII Testing Checklist

No single "BII test" exists. Diagnosis is clinical + exclusion of other causes + often improvement after explant. Use this checklist to ask informed questions and guide testing with your doctor.

Step 1: Medical History & Physical Exam

Step 2: Laboratory Testing

A. Baseline Labs (Rule Out Other Causes)

B. Inflammation & Autoimmunity (Core BII/ASIA Labs)

C. Immunoglobulin & Immune Function

Note: Anti-polymer antibodies have been studied but diagnostic value is uncertain. Don't rely solely on "silicone antibody" testsβ€”they are not standard.

Step 3: Imaging (Implant Integrity & Systemic Disease)

For Breast Implant Integrity:

FDA Recommendation: Periodic imaging (ultrasound or MRI) starting 5–6 years after implant placement, then every 2–3 years, even without symptoms.

Red Flags: Get Urgent Imaging if:

  • One breast suddenly swollen or enlarged
  • Late-onset seroma (fluid around implant)
  • Palpable mass or hardness
  • Skin changes or dimpling
  • Symptoms of BIA-ALCL (lymphoma)

For Systemic Disease Evaluation:

Step 4: Organ-Specific & Specialist Testing

Based on Your Symptoms, Ask About:

🧠 Neurologic Symptoms (Headaches, Brain Fog, Numbness, Stroke-like)
  • Brain/spine MRI – demyelination, ischemia, vasculitis
  • Neurologist referral
  • Small-fiber neuropathy: Skin punch biopsy or thermal threshold testing for burning/tingling pain
  • EMG: If muscle weakness (53% of BII have abnormal patterns)
❀️ Cardiac & Vascular Symptoms (Palpitations, POTS, Raynaud's)
  • Tilt-table test: Diagnose POTS (postural tachycardia)
  • Echocardiogram: Mitral valve prolapse, cardiac function
  • Nailfold capillaroscopy: Raynaud's and scleroderma-like changes
πŸ‘€ Sicca & Eye/Mouth Symptoms (Dry Eyes, Blurred Vision, Dry Mouth)
  • Schirmer's test: Objective tear production measurement
  • Tear break-up time & corneal staining: Ophthalmology evaluation
  • Minor salivary gland biopsy: Differentiates silicone-induced sicca from SjΓΆgren's (mononuclear infiltrate vs. lymphocytic)
πŸ’¨ Pulmonary Symptoms (Shortness of Breath, Nodules)
  • Chest CT: Pulmonary nodules, silicone embolism, interstitial lung disease
  • Pulmonary function tests (PFTs) – assess respiratory function
  • Pulmonologist referral if indicated
😴 Fatigue & Sleep Issues
  • Overnight polysomnography: Assess sleep quality objectively
  • 2-day cardiopulmonary exercise test: Document post-exertional malaise (hallmark of CFS/ME)
🚨 Concern for BIA-ALCL (Breast Implant-Associated Lymphoma)
  • Imaging (ultrasound/MRI): Look for peri-implant seroma or mass
  • If fluid/mass found: Needle aspiration or biopsy with:
    • Flow cytometry & immunohistochemistry
    • CD30 immunostaining: BIA-ALCL typically CD30+ and ALK-1 negative

πŸ“‹ Download Your Doctor Visit Checklist

Use this as a tool to take to your appointments:

The checklist includes:

  • Symptom checklist to present to your doctor
  • Implant history & timeline questions
  • Recommended labs with explanations
  • Imaging recommendations
  • Key references (Cohen Tervaert 2022, FDA, etc.)
  • Space to record your test results
Tip: Print or email this to your doctor BEFORE your visit so they can prepare. Many doctors lack familiarity with BII testing; a comprehensive checklist educates and guides the workup.

Resources & Community

πŸ₯ Find BII-Informed Doctors

Directory of plastic surgeons, rheumatologists, immunologists, and other specialists trained in BII diagnosis and explant surgery.

πŸ’¬ Support Groups & Communities

Connect with other survivors for emotional support, explant surgery prep, post-recovery healing, and advocacy.

Healing Breast Implant Illness Society (150k+ members) Breast Implant Safety Alliance (BISA)

πŸ“š Research & Articles

Peer-reviewed papers, expert reviews, and evidence-based information on BII/ASIA.

Cohen Tervaert et al. (2022) Expert Review of Clinical Immunology FDA Breast Implant Safety Information

Key Nonprofits & Organizations

Patient-Focused Nonprofits

Healing Breast Implant Illness Society of North America

Focus: Largest peer support community (150,000+ members)

Offerings: Facebook groups, emotional support, education, fundraising

Visit Website
Breast Implant Safety Alliance (BISA)

Focus: Evidence-based information, informed consent, policy advocacy

Offerings: Patient checklists, FDA collaboration, media outreach, surveys

Visit Website
Breast Implant Cancer Advocates

Focus: Specifically BIA-ALCL (lymphoma) education and support

Offerings: Disease education, legal advocacy, cancer patient support

Visit Website
BII Centers of Excellence

Focus: Doctor training, research dissemination, patient-doctor matching

Offerings: Certified surgeon directory, research updates, education

Visit Website

Research & Education Organizations

National Center for Health Research

Focus: Evidence compilation, informed consent, FDA advocacy

Key Work: Patient/doctor checklists, Black Box Warning advocacy

National Women's Health Network (NWHN)

Focus: Broader women's health; involved in implant safety policy

Legal & Policy Advocacy (Emerging Gap)

Currently, there is no dedicated nonprofit focused on BII legal advocacy (class actions, manufacturer liability, regulatory enforcement). This is a major gap.

Existing organizations with some legal involvement:

  • BISA – occasional FDA/policy work
  • National Women's Health Network – broader advocacy

πŸ“– Documentaries & Media

"Busted: A Documentary" – Investigative look at breast implant safety Busted Documentary Resources Page

🌍 Global & Government Resources

FDA Breast Implant Resource Groups FDA Breast Implant Safety & Labeling Health Canada Medical Device Recalls & Alerts

Survivor Stories & Testimonials

πŸ“’ Your Story Matters. We are collecting de-identified survivor testimonials to build community awareness, validate experiences, and contribute anonymized data for research. Share your story anonymously or publicly (your choice).

Sample Story #1: "10-Year Journey to Diagnosis"

(Anonymized survivor account)

2012: Cosmetic augmentation (saline implants). 2015: Chronic fatigue started; doctors blamed stress. 2018: Developed Raynaud's and joint pain; rheumatology workup inconclusive. 2022: Explant after BII diagnosis. 2023: 80% symptom improvement.

Key takeaway: Long lag between implant and systemic symptoms; many doctors don't connect the dots.

Sample Story #2: "Post-Explant Recovery"

(Anonymized survivor account)

2010: Breast reconstruction after mastectomy (gel implants). 2018: Severe fatigue, brain fog, autoimmune markers appearing. 2023: Explant + capsulectomy + physical therapy. 6 months post-explant: energy returning, labs improving, returning to work part-time.

Key takeaway: Reconstruction patients need BII monitoring; explant + rehabilitation can restore quality of life.

Sample Story #3: "Rare Complication – BIA-ALCL"

(Anonymized survivor account)

2014: Cosmetic augmentation with macrotextured implants. 2021: Sudden swelling of one breast; imaging showed seroma. Biopsy: CD30+ BIA-ALCL. 2021–2023: Chemotherapy + explant. Currently in remission.

Key takeaway: BIA-ALCL is rare but serious; early imaging and biopsy diagnosis crucial.

🎀 Share Your Story

We're collecting survivor stories to build a repository. Your anonymized account helps:

πŸ“Š Story Data Insights

As stories are collected, we'll publish anonymized insights:

Advocacy & Fighting Back

Why Advocacy Matters

BII affects 1+ million women, yet:

  • Many doctors don't recognize it
  • There's no official diagnosis code (ICD-10)
  • Explant is often not covered by insurance
  • Informed consent is inconsistent
  • Research funding is limited

Change requires patient voices, policy pressure, and community action.

Advocacy Actions You Can Take

1. Spread Awareness

  • Share your story on social media with #BIIAwareness #BreastImplantIllness
  • Create content: videos, infographics, blog posts on BII diagnosis & recovery
  • Tag medical professionals and patient organizations
  • Educate friends considering breast surgery

2. Advocate for Informed Consent

  • Request comprehensive informed consent materials before surgery
  • Ask surgeons: "What systemic complications are possible? How will you monitor me?"
  • Share FDA checklists with pre-op patients
  • Petition surgery centers for stronger disclosure practices

3. Push for Insurance Coverage

  • Contact your insurance company: request explant coverage for BII (medical, not cosmetic)
  • File appeals using peer-reviewed BII research
  • Join class actions or group advocacy for insurance reform
  • Advocate for ICD-10 diagnosis code for BII (currently lacks official coding)

4. Support Research

  • Participate in BII registries & patient surveys (de-identified data helps epidemiology)
  • Donate to nonprofits funding independent BII research
  • Share your medical records (anonymized) for research cohort studies

5. Educate Healthcare Providers

  • Share peer-reviewed papers (Cohen Tervaert 2022, FDA resources) with your doctors
  • Advocate for CME/CEU courses on BII diagnosis in medical schools & residencies
  • Request BII modules in rheumatology, immunology, and primary care training
  • Connect doctors with BII-certified specialists

6. Join or Support Nonprofits

  • Volunteer with BISA, Healing BII Society, BII Centers of Excellence
  • Donate to fund research, patient support, and advocacy
  • Participate in petitions and letter-writing campaigns

Critical Gaps to Address (Where You Can Help)

🚨 These gaps represent opportunities for new advocacy initiatives, nonprofits, or content creators.

1. ASIA (Adjuvant-Induced Autoimmune Syndrome) Broader Advocacy

Gap: ASIA affects women with hip implants, hernia mesh, vaccines (in susceptible people), and other adjuvantsβ€”but advocacy is fragmented.

What's Needed: A unified ASIA advocacy nonprofit that bridges all adjuvant exposures.

You can help: Create content connecting BII to broader ASIA awareness; advocate for international ASIA recognition.

2. Diagnostic Training for Doctors

Gap: No formal CME/CEU curriculum for diagnosing BII/ASIA. Front-line doctors lack training.

What's Needed: Online courses, grand rounds, medical school modules on BII testing protocols.

You can help: Create educational videos; partner with medical schools; fund curriculum development.

3. National BII/ASIA Patient Registry

Gap: No centralized registry tracking BII cases, diagnostics, treatments, outcomes. Epidemiology unclear.

What's Needed: Open-source, IRB-approved registry collecting anonymized patient data.

You can help: Participate in registries; advocate for data standardization; help publicize findings.

4. Insurance & ICD-10 Code Advocacy

Gap: BII has no ICD-10 diagnosis code; explant denied as "cosmetic" instead of medical.

What's Needed: Push for official ICD-10 code; insurance coverage campaigns; legal class actions.

You can help: Document insurance denials; support class action lawsuits; contact legislators.

5. Post-Explant Recovery Standards

Gap: No evidence-based post-explant recovery protocols. Claims about "detoxification" lack rigor.

What's Needed: Research on post-explant healing; rehabilitation guidelines; immune restoration protocols.

You can help: Fund research; create post-explant recovery guides; share your recovery timeline.

6. Workplace & Disability Advocacy

Gap: BII patients with CFS/ME-like fatigue lack disability support and workplace accommodation advocacy.

What's Needed: ADA accommodation guides; disability benefits advocacy; partnership with ME/CFS groups.

You can help: Share workplace challenges; advocate for disability recognition; connect BII + ME/CFS communities.

7. Global & International Advocacy

Gap: BII is under-recognized outside North America. Different regulatory standards worldwide.

What's Needed: International BII advocacy network; local chapters in Europe, Asia, Australia; global surveillance.

You can help: Create multilingual content; build global social media networks; advocate with international regulators.

8. Mental Health & Body Image Support

Gap: Limited resources for psychological impact of explant, body dysmorphia, grief.

What's Needed: Therapists trained in BII trauma; support groups; body image counseling.

You can help: Connect survivors with mental health resources; normalize mental health discussions; fund therapy access.

Creator Resources & Media Toolkit

As a content creator, you can amplify BII awareness through videos, social media, articles, and more. Here are resources:

Social Media Talking Points

Video Content Ideas

  • "What is BII?" – 2-3 min explainer on symptoms, science, and testing
  • "My BII Story" – Personal timeline from implant to diagnosis to recovery
  • "Questions to Ask Your Surgeon" – Pre-op checklist for informed consent
  • "Doctor's BII Testing Guide" – Walkthrough of labs, imaging, specialist referrals
  • "Post-Explant Recovery" – What to expect, rehabilitation tips, mental health support
  • "Workplace Rights & BII" – ADA accommodations, disability benefits, advocating for yourself
  • "Debunking BII Myths" – Addressing surgeon/media dismissal of BII
  • "Meet the Experts" – Interviews with BII-trained doctors, researchers, advocates

Infographic Ideas

  • BII Symptom Spectrum Wheel (showing systemic symptoms)
  • Timeline: "From Implant to BII to Recovery"
  • "What's Wrong with BII Testing? (And what doctors should order)"
  • "Autoimmune Diseases Linked to Breast Implants" (with prevalence data)
  • "Your Rights: Informed Consent Checklist"
  • "BII vs. Surgeon Claims: Fact Check"

Citation & Fact-Checking Resources

  • Primary Source: Cohen Tervaert et al. (2022) Expert Review of Clinical Immunology
    DOI: 10.1080/1744666X.2022.2010546
    PMID: 34882509
  • Epidemiology: Watad et al. (2018) meta-analysis on autoimmune risk with implants
  • BIA-ALCL: van der Meulen et al. (2018) on lymphoma risk
  • FDA Resources: FDA.gov/medical-devices/breast-implants
Fact-Check Best Practice: Always link to peer-reviewed sources, FDA statements, and expert organization guidelines. This builds credibility and prevents misinformation.

Partnership Opportunities

  • Collaborate with BISA, Healing BII Society for cross-promotion
  • Partner with ME/CFS and fibromyalgia creators for content synergy
  • Guest appearances on medical/health podcasts
  • Reach out to feminist health & women's autonomy channels
  • Advocate with journalists covering medical device safety