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Annotated sources — patient voice layer (session 2026-08-27)

Every entry below was verified during the writing session: web pages by direct fetch, videos by inspection of search-result listings (title/channel/description), papers by live PubMed query. Names of private individuals appearing in publishers' own page/video titles are elided as "[name]" per this layer's ethics rules; URLs preserve verifiability. Access date for all web items: 2026-08-27.

(a) Organization story / testimonial pages (fetched)

Source URL What it covers
Aortic Dissection Awareness UK & Ireland — "Patient Stories" hub https://aorticdissectionawareness.org/patients-and-families/patient-stories 13 dissection stories, ages 30–77. Aggregate themes: sudden onset during ordinary activity (exercise, travel, work, routine appointments; one intra-operative dissection); emergency surgery incl. hemiarch/total-aorta replacement; staged repairs; long rehabilitation; resilience and relationship framing.
Aortic Hope — Survivor Series category page https://www.aortichope.org/blog/categories/survivorseries ~27 posts of recorded interviews/written stories by survivors and caregivers, plus "Where Are They Now?" follow-ups. Aggregate themes: acute crisis → prolonged recovery; adapting to constraints rather than returning to baseline; peer validation as therapeutic ("Thrive and not just Survive" framing); stories reused for Think Aorta US clinician education.
The Marfan Foundation — community blog hub https://marfan.org/blog/ Community stories across Marfan/LDS/VEDS: conference-born friendships, mental-health burden of VEDS, families converting bereavement into awareness events, lived-experience members entering healthcare careers, pregnancy planning under high-risk care.
John Ritter Foundation — "Ritter Rules" https://johnritterfoundation.org/ritter-rules/ The foundation's core patient-education artifact: advocacy, multidisciplinary care access, family screening ("Up to 1 in 5" familial), mental-health support (anxiety/PTSD named), lifelong imaging/BP care; "Severe pain is the #1 symptom" of acute dissection.
The Marfan Foundation — #LarsonLove Challenge announcement https://marfan.org/2026/04/13/raise-marfan-syndrome-awareness-save-lives-with-the-larsonlove-challenge/ Awareness campaign marking 30 years since Jonathan Larson (creator of Rent, public figure) died at 35 of aortic dissection from undiagnosed Marfan; "Seasons of Love" video challenge with family blessing; aim: earlier diagnosis.
Organization homepages (17) see organizations.md Mission/program/research-involvement claims for each verified organization; each fetched this session.

(b) News / feature articles (fetched)

Source URL What it covers
British Heart Foundation, Heart Matters — "Dancing back to health" [name withheld] https://www.bhf.org.uk/informationsupport/heart-matters-magazine/my-story/dancing-back-to-health Dissection survivor feature: atypical presentation (sudden arm weakness, no acute pain), delayed help-seeking, emergency repair complicated by strokes, induced coma, relearning basic motor tasks, vocal-cord damage affecting breathing, fear of losing a defining passion (dance) and recovery organized around regaining it.
British Heart Foundation, Heart Matters — Roger Black story (public figure) https://www.bhf.org.uk/informationsupport/heart-matters-magazine/my-story/roger-black-open-heart-surgery Olympic 400m medalist: bicuspid aortic valve found at 11; 47 years of annual surveillance through elite sport; 2024 deterioration with dangerously enlarged aorta — "a ticking time bomb" (his phrase); fear/control-surrender before valve+aorta surgery; AF complication; jogging again at 4 months. Textbook watchful-waiting-to-surgery patient narrative.
Sharp HealthCare news — "'Ticking time bomb' survives often fatal condition" https://www.sharp.com/health-news/ticking-time-bomb-survives-often-fatal-condition Fetched. Type A dissection survivor feature: sudden chest pain/dyspnea/dizziness at a family event; emergency open repair under deep hypothermic circulatory arrest; discharged in a week. The treating cardiothoracic surgeon applies the "ticking time bomb" phrase (1–3%/h early mortality); survivor describes gratitude, medication commitment, not taking life for granted.
Penn Medicine news — "A ticking time bomb heart and a family kept intact" https://www.pennmedicine.org/news/a-ticking-time-bomb-heart-and-a-family-kept-intact Listing-verified only (title seen in search results; page fetch returned empty content). Used solely as evidence that the "ticking time bomb" frame pervades hospital-published survivor features — not for story details.

(c) Video content (verified from search listings only — see coverage limits)

Identified via site:youtube.com searches ("aortic dissection survivor story", "thoracic aortic aneurysm patient story", "Marfan syndrome my story", "think aorta / aortic dissection awareness"). Cited from listing data (title, channel, description snippet); videos were not played and transcripts were not retrieved.

Video (title as listed; private names elided) Channel / publisher URL What the listing shows
AHTV — Survivor Series (playlist) Aortic Hope https://www.youtube.com/playlist?list=PLXbCdIgPAMomS16Lro1Kn0stuZELnnSFL Collection of survivor/caregiver interview videos matching the org's written Survivor Series.
"Hoag Aortic Dissection Survivor, [name] Shares Story and Support" Hoag (hospital) https://www.youtube.com/watch?v=1TjKduLGnZU Survivor shares story and supports other survivors; hospital-produced.
"Patient Story: Mother and Baby Survive Aortic Dissection" hospital channel (per listing) https://www.youtube.com/watch?v=v3_AqB5AWZs Peripartum dissection survival retold by patient, spouse, and clinicians — pregnancy-associated dissection theme.
"Aortic Dissection [name]'s Story" Johns Hopkins Medicine (per listing) https://www.youtube.com/watch?v=NVq5OF4iUdc
"'I'm very lucky to be alive' — Aortic Dissection Personal Story" Heart Foundation NZ https://www.youtube.com/watch?v=vN39ciGy_Es NZ survivor: 2015 emergency dissection surgery; later further procedures — survivorship as ongoing disease.
"Aortic Dissection Survivor Stories — [two names]" (per listing) https://www.youtube.com/watch?v=NTW49tNjI08 Paired survivor testimony video.
"Aortic Aneurysm and Valve Repair — [name]'s Mayo Clinic Story" Mayo Clinic https://www.youtube.com/watch?v=LHujQ4385dk TAA + valve repair diagnosis-to-recovery patient story.
"My Story Living with Marfan syndrome" (individual creator, per listing) https://www.youtube.com/watch?v=YTmy6u14wAk
"Living with Marfan Syndrome or a Related Condition" (playlist) (per listing; Marfan community) https://www.youtube.com/playlist?list=PL15Tld-UNc9uXEAYf5-aa6b5QxDh8U1DQ Story playlist across Marfan/related conditions.
"Teen with Marfan Syndrome: [name]'s Story" (per listing) https://www.youtube.com/watch?v=WUFyfS_TFBg Pediatric Marfan: open-heart surgery at age 5 — childhood-onset surgical burden.
"Woman With Marfan Syndrome Could Tear Aorta At Any Moment" (short) (per listing) https://www.youtube.com/shorts/caHZXRCsSrM Short-form framing of dissection risk in Marfan — "could tear at any moment" surveillance-threat trope.
ThinkAortaUS (channel) Think Aorta US https://www.youtube.com/@ThinkAortaUS US arm of THINK AORTA; campaign videos for correct ED identification of dissection.
"The THINK AORTA Podcast" (playlist) (per listing; Univ. of East Anglia + Aortic Dissection Awareness collaboration) https://www.youtube.com/playlist?list=PLjV8uAaqunjwXOPqxB_Mxc_QSAxVwId3F Podcast series on dissection awareness/diagnosis.
"[name]'s Story — THINK AORTA" THINK AORTA (per listing) https://www.youtube.com/watch?v=MQmrISwr39A Survivor story produced for WHO World Patient Safety Day.
Aortic Dissection Awareness UK & Ireland (channel) + "Today is a good day" videos AD Awareness UK & Ireland https://www.youtube.com/@aorticdissectionawarenessuki ; https://www.youtube.com/watch?v=BSEnk1weTnc Charity channel; campaign videos; listing notes 2016 founding by "a small group of survivors".
"Know Your Aorta! Aortic Dissection Awareness Day" GADA Canada https://www.youtube.com/watch?v=niNjwmzIvS0 Canadian awareness-day video — Awareness Day observance.

Not used: one search hit promoting "Ayurvedic treatment" of TAA (https://www.youtube.com/watch?v=A2QGJ1IETA8) was excluded as non-credible medical content; purely procedural/surgeon-lecture videos were excluded as not patient-voice.

(d) Published qualitative / patient-experience research (PubMed-verified this session)

Core qualitative & mixed-methods studies:

  1. Lee JR, et al. Lived experiences of people with or at risk for aortic dissection: A qualitative assessment. Semin Vasc Surg. 2022;35:78-87. PMID 35501045 — four themes: "unnecessary drama" at diagnosis; unmet information/support needs; burden of self-advocacy/care coordination; unaddressed mental health.
  2. Velvin G, et al. Quality of life in people with syndromic heritable thoracic aortic disease and their relatives: a qualitative interview based study. Orphanet J Rare Dis. 2025;20:12. PMID 39789589 — 47 participants (MFS/LDS/vEDS/relatives); psychosocial well-being + care-relationship subthemes; calls for patient-derived QoL instruments.
  3. Liu C, et al. Psychological experiences of patients with Stanford type B aortic dissection during the preoperative waiting period: a qualitative study. BMC Cardiovasc Disord. 2026;26. PMID 42277648 — uncertainty construction, waiting appraisal, coping, trust (Mishel UIT framework).
  4. Gao J, et al. Influencing factors of health promotion behaviour in patients with aortic dissection: a qualitative study using the COM-B model. BMJ Open. 2025;15:e076181. PMID 40044200 — knowledge deficits, stigma, fear of progression, post-traumatic growth.
  5. Feng J, et al. Attitudes and behavioral intentions of aortic dissection survivors towards exercise (HAPA framework). Rev Cardiovasc Med. 2022;23:64. PMID 35229555 — 24 interviews; exercise cognition/barriers/facilitators. Companion questionnaire study: PMID 39077130.
  6. Abbasciano R, et al. Patient and family perspectives on cascade screening for thoracic aortic disease: a mixed-methods evaluation. Eur J Hum Genet. 2026;34:947-955. PMID 41772284 — barriers to cascade screening (fragmented services, communication burden, psychological cost).
  7. Lee JR, et al. A mixed method approach to understanding the impact of COVID-19 on patients with or at risk for aortic dissection. Semin Vasc Surg. 2022;35:100-109. PMID 35501037 — surveillance disruption + telehealth benefits.
  8. Somalo-Barranco G, et al. Management of pregnancy in women with rare multisystemic vascular diseases: a qualitative survey analysis. Orphanet J Rare Dis. 2026. PMID 42365315 — VASCERN survey incl. ePAG patient representatives.

Survivorship burden — quantitative patient-report:

  1. Pasadyn SR, et al. From Tear to Fear: Posttraumatic Stress Disorder in Patients With Acute Type A Aortic Dissection. J Am Heart Assoc. 2020;9:e015060. PMID 32340520 — 23% PTSD screen-positive at median 6.8 y; only 7.4% documented in EMR.
  2. Chaddha A, et al. Survivors of Aortic Dissection: Activity, Mental Health, and Sexual Function. Clin Cardiol. 2015;38:652-9. PMID 26769699 — 32% new-onset depression, 32% anxiety; sexual activity 38%→11% "mostly due to fear".
  3. Chaddha A, et al. Exercise and Physical Activity for the Post-Aortic Dissection Patient: The Clinician's Conundrum. Clin Cardiol. 2015;38:647-51. PMID 26769698. Patient-education version: Circulation 2014;130:e140-2. PMID 25311622.
  4. Chaddha A, et al. Medication adherence patterns in aortic dissection survivors. Indian J Med Res. 2018;147:183-188. PMID 29806607 — 64% adherent at ~7 y.
  5. Chaddha A, et al. The Clinical Impact of Imaging Surveillance and Clinic Visit Frequency after Acute Aortic Dissection. Aorta (Stamford). 2019;7:75-83. PMID 31614376.
  6. McEntire A, et al. Psychological distress in response to physical activity restrictions in patients with non-syndromic thoracic aortic aneurysm/dissection. J Community Genet. 2021;12:631-641. PMID 34386933.
  7. Millette TJ, et al. Exercise, Sports Participation, and Quality of Life in Young Patients with Heritable Thoracic Aortic Disease. Med Sci Sports Exerc. 2024;57:260-266. PMID 39352231 — 88% restricted; 65% compete anyway; exercise ↔ higher QoL.
  8. Bacour Y, et al. From Survival to Recovery: … Activity, Sleep, and Quality of Life. J Clin Med. 2025;14:859. PMID 39941528 — Dutch SADN-recruited cohort; 55.7% poor sleepers.
  9. Luo B, et al. Comparative analysis of postoperative sexual dysfunction and quality of life in type A aortic dissection patients of different ages. J Cardiothorac Surg. 2021;16:117. PMID 33933114 — SD prevalence 38.9%.
  10. Dreher H, et al. Symptoms of post-traumatic distress and quality of life in adults with aortopathy and congenital heart defects or hereditary connective tissue diseases. Cardiovasc Diagn Ther. 2025;15:781-791. PMID 40948724.

Syndromic HTAD psychosocial corpus (TRS Norway et al.):

  1. Velvin G, et al. Systematic review of quality of life in persons with hereditary thoracic aortic aneurysm and dissection diagnoses. Clin Genet. 2019;95:661-676. PMID 30788842 — QoL evidence exists only for MFS; none for LDS/vEDS.
  2. Velvin G, et al. Satisfaction with life in adults with Marfan syndrome. Qual Life Res. 2016;25:1779-90. PMID 26727916.
  3. Velvin G, et al. Work participation in adults with Marfan syndrome. Am J Med Genet A. 2015;167A:3082-90. PMID 26420568.
  4. Bathen T, et al. Fatigue in adults with Marfan syndrome. Am J Med Genet A. 2014;164A:1931-9. PMID 24719044.
  5. Lidal IB, et al. A scoping review … paediatric and adolescent patients with Marfan syndrome. Acta Paediatr. 2020;109:1758-1771. PMID 31977115 — psychosocial topics only 2% of studies.

Patient-centered research infrastructure & advocacy (the Aortic Dissection Collaborative cluster and organization-linked papers):

  1. Lee JR, et al. The Aortic Dissection Collaborative: Methods for building capacity for patient-centered outcomes research… Semin Vasc Surg. 2022;35:9-15. PMID 35501047.
  2. Ilonzo N, et al. The mental health impact of aortic dissection. Semin Vasc Surg. 2022;35:88-99. PMID 35501046.
  3. Talutis SD, et al. Stakeholder perspectives on education in aortic dissection. Semin Vasc Surg. 2022;35:69-77. PMID 35501043 (Marfan Foundation co-author).
  4. Russo M, et al. Aortic dissection in pregnancy and the postpartum period. Semin Vasc Surg. 2022;35:60-68. PMID 35501042.
  5. Nishath T, et al. Implementation of telemedicine in the care of patients with aortic dissection. Semin Vasc Surg. 2022;35:43-50. PMID 35501040 (VEDS Movement co-author).
  6. Pena RCF, et al. An assessment of the current medical management of thoracic aortic disease: A patient-centered scoping literature review. Semin Vasc Surg. 2022;35:16-34. PMID 35501038.
  7. Grewal S, et al. From survival to lifelong care: The role of patient organisations in aortic dissection. Am Heart J Plus. 2026;68:100834. PMID 42491301.
  8. Harky A, et al. COVID-19 and cardiac surgery: A perspective from United Kingdom. J Card Surg. 2020;36:1649-1658. PMID 32981073 (two Aortic Dissection Awareness UK & Ireland co-authors; includes patient survey of attitudes to aortic surgery during COVID).
  9. Lee MY, et al. Lost to follow-up: A narrative review of socioeconomic, psychosocial, and systemic barriers to aortic dissection surveillance. Semin Vasc Surg. 2026;39:166-172. PMID 42285644.

Misdiagnosis / diagnostic-delay evidence (the target of the awareness campaigns):

  1. Lovatt S, et al. Misdiagnosis of aortic dissection: A systematic review of the literature. Am J Emerg Med. 2022;53:16-22. PMID 34968970 — pooled misdiagnosis 33.8%.
  2. Harris KM, et al. Correlates of delayed recognition and treatment of acute type A aortic dissection (IRAD). Circulation. 2011;124:1911-8. PMID 21969019 — median 4.3 h ED-to-diagnosis; delays in women/atypical presentations.
  3. Holmes HR, et al. Misdiagnosis of Thoracic Aortic Disease Occurs Commonly in Emergency Transfers. Ann Thorac Surg. 2022;114:2202-2208. PMID 34838743 — names "Think Aorta" as an improvement lever.
  4. Reed MJ. Diagnosis and management of acute aortic dissection in the emergency department. Br J Hosp Med. 2024;85:1-9. PMID 38708978 — cites awareness campaigns among fixes.

Patient-reported outcome measurement (the instrument gap):

  1. Shan R, et al. Dissecting Aortas and Patient Reported Outcome Measures. Eur J Vasc Endovasc Surg. 2023;66:351. PMID 37451607 — editorial on the PROM gap in aortic dissection.
  2. Huang W, et al. Preliminary evaluation of the Chinese PROMIS-29 in patients with aortic dissection. Health Qual Life Outcomes. 2022;20:94. PMID 35701761 — first validation effort; notes PROMIS-29 previously unvalidated in aortic disease. Follow-on latent-profile study: PMID 40483516.
  3. Meltzer AJ, et al. Patient-reported Quality of Life after Endovascular Repair of Thoracoabdominal Aortic Aneurysms. Ann Vasc Surg. 2017;44:164-170. PMID 28527678 — SF-36 in n=22.
  4. Smolderen KG, et al. Evolving dynamic needs for patient-reported outcomes assessment in individuals with an abdominal aortic aneurysm: A systematic review. Vasc Med. 2026. PMID 41854119 — even in AAA, only 5 disease-specific instruments and minimal mental-health capture (comparator for the thoracic gap).
  5. Knops AM, et al. A decision aid regarding treatment options for patients with an asymptomatic abdominal aortic aneurysm: a randomised clinical trial. Eur J Vasc Endovasc Surg. 2014. PMID 24913683 — decision-aid RCT exists for AAA; no TAA equivalent found this session.

Coverage limits (honest-depth note)

  • Videos: verified from search-result listings only (titles, channels, description snippets). No video was played; no transcripts were pulled; no comment threads were read — so nothing here characterizes YouTube comment discourse, and view counts/dates were not captured.
  • One hospital news feature (Penn Medicine "ticking time bomb" story) is cited for its title/framing only; its fetch returned empty page content. The Sharp HealthCare feature was successfully fetched.
  • vascern.eu blocked direct fetches (HTTP 403); VASCERN facts rest on a PubMed-retrieved VASCERN-authored paper plus search listings.
  • Closed communities (SADN and Marfan-org Facebook groups, org-run private support groups) were deliberately not accessed; their existence is documented from public pages only.
  • No forum scraping (Reddit, patient forums): excluded by the layer's ethics design, so themes may under-represent unfiltered peer-to-peer discourse relative to organization-curated stories.
  • Search engine scope: English-dominant queries with spot checks in German, Dutch, French, Japanese; non-English patient-experience literature and organizations beyond those listed are likely under-sampled (e.g., no verified org found for Spain, Italy, Nordic countries, or Latin America this session — Sweden's and other countries' presence is suggested only by Aortic Hope's claimed global reach).
  • Individual stories were not read in depth: hub pages were summarized in aggregate by design; per-story detail beyond the hub summaries was not collected, to comply with the no-dossier rule.