Voices Across America Find Patient Stories Relevant to You Browse the map or filter by: Disease(s) Blood DiseaseBone / Muscle DiseaseCancerChronic PainCOVID-19Ear / Nose / Throat DiseaseEndocrine DiseaseEye DiseaseGastrointestinal DiseaseGenetic DiseaseHeart DiseaseImmune DiseaseKidney DiseaseLiver DiseaseLung DiseaseMental HealthMigraineNeurological DiseaseRare DiseaseReproductive DiseaseSkin DiseaseUrological Disease Issue(s) Abuse (Mental, Physical, Elder)Access to Expert ProvidersAddiction / Substance AbuseBiologics / BiosimilarsCaregivingCopay AccumulatorsCopay IssuesDisabilityDiscrimination (nonmedical)Financial AssistanceFood InsecurityGaslightingGeographyHousingInsuranceInsurance Coverage is InadequateICERInvisible IllnessJob Insecurity / LossMedical DiscriminationMedical RecordsMedicare / Medicaid IssuesMental Health AccessNon-Medical SwitchingNursing Home / Assisted LivingOral ParityOut of Pocket CostsPremium PaymentsRare / Underserved DiseaseRebate SharingSocial Security DisabilityStep TherapySuicide / Self-harmSurprise BillingTransparency in Health CareTransportationUnderserved CommunityUninsured Congressional District(s) CA13CA14CA17CA27CA32CA45CT05FL06FL08FL18GA07ID01IL10IL14IN09KS02LA04MA04MA06MA09MD04MD05ME01MI11MO05MO06NC03NC04NC08NC09NC12NH 2NJ04NJ05NM03NY10NY14NY16NY27OH11OK05OR01OR04PA01PA17SC01TN02TX03TX09TX19TX21TX32VA 1VA 9VA06VA07VA08VA10VA11VT01WA04WA07WI02WI03WI04 Click on pins to view stories. 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Coming to terms with surgery improved my IBD Nearly 10 years to get an accurate diagnosis MS, American v Argentinian health care, and great family support Familial Adenomatous Polyposis – my life as a polyp Lynch Syndrome, colon cancer, but still alive and kicking Step therapy interfered with my bone loss treatment Fibromyalgia stole my Olympic dream Duchenne Muscular Dystrophy – fighting for what’s right More than one diagnosis at a time – Looms4Lupus The argument for more research funding for migraine disease Psoriasis and what made me an advocate For the 60 million Americans with allergies and asthma PIVOT and life after cancer Congenital Diaphragmatic Hernia and Shane For John – putting patients at the heart of research Intravenous Immunoglobulin for life – a good life PKU, still a long way to go From Juvenile RA to adult RA – the many obstacles to care Providers keep delaying my need for pain relief As a woman of color with psoriasis, I have to self-advocate Multiple Myeloma and Step Care Sequencing Copay Accumulator Adjustment Programs: Anti-Patient Practice Living in Constant Pain – Where is the help? Hearing loss may have shaped me, but it has not defined me Assisted Living Residence vs Personal Care Home: What’s the difference? Lupus: we are the CEOs of our bodies Living with an Eating Disorder Migraine, Mental Health, and Gaslighting Medical Gaslighting had me doubting my disease Occipital Neuralgia pain – treatment hard to find Chronic pain and how it changed my life What decades of caregiving have taught me Arginase Deficiency: my child and grandchild Discrimination against me for my chronic pain Medicaid saved my life from cancer Engage patients in research – for John Going Miles for Migraine Ignored and dismissed in the ER I’m a “Dadvocate” with a rare disease Cluster headaches and CMS undermines treatment Psoriasis, Step Therapy, Community, Advocacy Oral Parity in multiple myeloma treatment Step Therapy wasted a year of my life Choosing a job based on health insurance Racial discrimination in my migraine care A legacy in wood work Multiple Myeloma helped refine my voice as an advocate COPD and how it led me to Advocacy Carrying the cost of MoyaMoya Disease Epidermolysis Bullosa and why I advocate In pain, but pain doctors won’t help Depression: Setting an example for my kids MS – I do this for my dad Ten Minutes for MS Cancer and a Love of Star Wars Child born with rare disease now old enough to give back Fighting to be by her father’s side during the pandemic Joy Helping Other Cope with Lupus Their disbelief may have caused her cancer Bullied because of her rare disease Disabled and Fighting with Medicare and Medicaid Forced off a working therapy Intersecting Art and Advocacy Finding Inspiration in 17+ Years of Neuralgia Protecting the Privacy of Patients My greatest curse, my greatest blessing Occipital Neuralgia and my dog Occipital Neuralgia – filling a void empower patients with health literacy From Trauma to Triumph with Diabetes The system isn’t built for rare diseases ALS and a better life for my son Kimberly, Reynaud’s and suprise billing My Diagnosis – so close, so far away Step Therapy Left Me With Chronic Pain It’s…frustrating. I’ve now got to pay large bills myself 6 years fighting for a drug approval for duchenne MD Knowing that there is someone battling the system for me Helping make a change for other diabetics Advocate for those suffering with PMDD Jim, and growing up with depression I Fight for My Dad Latest Updates New patient story by Daanish published on June 16, 2021. New patient story by Megan published on June 11, 2021. New patient story by Sarah Page published on June 9, 2021. Get the most from every Story Find A Compelling Patient Story Share it on social media. Find A Story Share Your Story On Our Network Share your insights, challenges and what keeps you going. Share Your Story
