Tag

Patient Advocacy

All articles tagged with #patient advocacy

health1 day ago•49 min saved

Unchecked Symptoms End in Glioblastoma at 23

A 23-year-old medical student endured years of stroke-like episodes and fatigue that doctors repeatedly attributed to stress or health anxiety, with his father saying they visited about 50 doctors. A May 2025 episode led to emergency brain surgery that uncovered a 5 cm glioblastoma; prognosis is poor (12–18 months). He’s undergoing chemotherapy and radiation and is traveling to Germany for cutting-edge immunotherapy, as his family urges clinicians to take persistent symptoms in young people more seriously and push for earlier scans.

via Yahoo Lifestyle Canada|

#brain-cancer #glioblastoma #health

health1 day ago•35 min saved

Endometriosis Finally Heard: A Painful Journey from Dismissal to Diagnosis

Amy Peckham-Driver endured crippling period pain from endometriosis and was repeatedly dismissed as anxious by doctors until she was diagnosed at 27; during surgery her pelvis was described as looking like a bomb had gone off, prompting her to found Let’s Talk Women’s Health Suffolk and campaign for earlier recognition and better care for women’s health.

via Yahoo|

#endometriosis #health #medical-gaslighting

health7 days ago•2 min saved

Rare-disease advocates challenge FDA on gene-therapy approvals

Advocates for rare diseases express concern after the FDA rejected Regenxbio’s MPS type 2 gene therapy and signals a more cautious, data-heavy approval path that could delay access to promising treatments highlighted by newborn screening.

via statnews.com|

#biotechnology #fda #gene-therapy

health13 days ago•5 min saved

When Early Signs Are Overlooked: One Woman’s Crohn’s Journey and Ostomy Advocacy

Paula Sojo’s viral TikTok recounts years of dismissed symptoms before a severe Crohn’s diagnosis at 18, followed by surgeries including a proctocolectomy and a permanent ostomy; now in remission and using her platform and her Osto•me Fashion brand to raise awareness, empower ostomy wearers, and push for earlier detection in others.

via AOL.com|

#crohns-disease #health #misdiagnosis

health15 days ago•6 min saved

Diving Into Long Covid: One Woman’s Quest to Stay Afloat

A 34-year-old writer recounts living with long Covid—enduring fatigue, nausea, and multi-system symptoms that upended her career and finances—while detailing ongoing, multi-specialist care. She describes how careful, low-level activity and a support network enable moments of normalcy, such as buoyancy-assisted diving, underscoring the need for sustained research and accessible treatment for a condition with a broad and evolving impact.

via The Guardian|

#chronic-illness #diving #health

health1 month ago•5 min saved

Proactive Risk, Delayed Action: An OB-GYN's Fight for a Preventive Double Mastectomy

An LA OB-GYN promoted a two-minute lifetime breast cancer risk score to patients and tested herself, learning her risk was 37.5%. After facing years of pushback from doctors, she eventually underwent a preventive double mastectomy, only to have a week later pathology reveal invasive stage 1 breast cancer, validating her caution. The case highlights the challenges of imaging in dense breast tissue, the potential limits of risk estimates, and the importance of advocating for one’s own health, a stance she has continued through a health podcast.

via Business Insider|

#breast-cancer #breast-density #health

health1 month ago•11 min saved

When Doctors Doubted Me: A 13-Year Fight to Diagnose MS

A HuffPost essay recounts a 13-year medical odyssey in which a woman’s MS symptoms were repeatedly dismissed as non-specific or psychosomatic, with early MRI findings misattributed to migraines and a lumbar puncture only performed years later to confirm MS. Throughout, she faced dismissive, invasive, or patronizing treatment from doctors—especially toward women—and endured a relentless cycle of doubt even after diagnosis. The piece argues this gaslighting reflects broader gender biases in medicine, and it ends with a renewed commitment to advocacy, empathy, and trustworthy care as she continues treatment and healing.

via HuffPost|

#chronic-illness #health #medical-gaslighting

health1 month ago•57 min saved

Pain Overruled: Women’s Stories of Medical Bias by Doctors

A BuzzFeed feature compiles firsthand accounts from women who say male doctors frequently dismissed their symptoms, delaying diagnoses and care—from ruptured appendixes misattributed to period pain to late cancer detection—highlighting ongoing gender bias in healthcare.

via BuzzFeed|

#er #health #healthcare

health2 months ago•4 min saved

Dyer-Griffith Criticizes Rising Cancer Treatment Costs

Nicole Dyer-Griffith highlights the exorbitant cost of cancer medication in Trinidad and Tobago, which can reach $40,000 per month, making treatment inaccessible for many. She advocates for a dedicated patient support and advocacy center, the Healing Hub, to provide credible information and emotional support, aiming to establish a free, physical facility by 2026 to improve patient care and reduce healthcare disparities.

via Trinidad Express Newspapers|

#cancer #healing-hub #health

health2 months ago•4 min saved

Maximizing Your Doctor’s Appointment: Tips for Patients

To maximize the effectiveness of a doctor's visit, patients should prepare by making a list of symptoms and questions, updating their medical history, and bringing a friend if needed. This helps ensure important concerns are addressed and reduces the chance of forgetting key information during the appointment.

via AP News|

#doctor-visit #health #health-questions

health5 months ago•3 min saved

Ovarian Cancer Patient Claims Symptoms Were Ignored by Medical Staff

Natasha Reynolds, a 23-year-old woman from Sheffield, experienced an 18-month delay in ovarian cancer diagnosis due to her symptoms being dismissed by doctors as IBS or endometriosis, highlighting the need for better listening and investigation by medical professionals. Now cancer-free after surgery, she urges women to advocate for themselves and for doctors to take persistent symptoms seriously, as new NHS guidelines aim to improve early diagnosis.

via BBC|

#health #misdiagnosis #nhs

health6 months ago•13 min saved

Doctors' Misdiagnoses: 47 Cases Where Patients Suffered

The article highlights numerous cases of medical gaslighting where healthcare professionals dismissed or misdiagnosed patients' symptoms, often leading to delayed treatment and serious health consequences. It emphasizes the importance of patients trusting their instincts, seeking second opinions, and being proactive in their healthcare, while also acknowledging that some misdiagnoses are unintentional due to biases or lack of knowledge.

via Bored Panda|

#delayed-diagnosis #diagnosis-errors #health

health7 months ago•6 min saved

Understanding Facility Fees at Your Doctor's Office

Patients across the U.S. are surprised by high 'facility fees' added to medical bills for outpatient visits, often without clear prior notice, leading to confusion and financial strain. Experts advise asking about these fees beforehand, reviewing bills carefully, and understanding state laws to manage costs. If unaffordable, options include negotiating with providers, seeking discounts, or exploring legal protections. The issue is compounded by hospital ownership of outpatient practices and limited regulation, prompting calls for legislative change.

via NBC News|

#facility-fees #health #healthcare-costs

health8 months ago•6 min saved

FDA regulations threaten treatment access for ultra-rare disease patients

Patients with ultra-rare diseases like Hope Filchak's MLS syndrome face challenges in accessing treatments due to strict FDA approval processes, exemplified by the rejection of the drug elamipretide despite positive advisory committee recommendations, raising concerns about the balance between safety and urgent patient needs.

via The Guardian|

#drug-approval #elamipretide #fda

health1 year ago•3 min saved

Battling Cancer and Insurance: A Dual Struggle

The article highlights the struggles of Americans dealing with health insurance issues while facing serious medical conditions, such as cancer. Patients like Arete Tsoukalas and Isaac Rosenbloom face high costs and denied treatments, leading to significant stress and financial burden. The recent shooting of UnitedHealthcare CEO Brian Thompson has brought attention to widespread frustrations with the insurance system, as many people share stories of denied claims and unexpected bills. Despite these challenges, a majority of insured adults still rate their insurance positively, according to a KFF survey.

via CNN|

#cancer-treatment #health #health-insurance