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 Access to Care & Affordability Issue(s) Access to Expert ProvidersAccess to MedicineCopay Issues / Out of Pocket CostsInsurance IssuesMedicare / Medicaid IssuesMedical Records AccessMental Health AccessRare / Underserved DiseaseSurprise BillingTransportation Additional Issue(s) Abuse (Mental, Physical, Elder)Addiction / Substance AbuseCaregivingCopay AccumulatorDisabilityDiscrimination (nonmedical)Financial AssistanceFood InsecurityGaslightingGeographyHousingInvisible IllnessJob Insecurity / LossLegalLodgingMedical DevicesMedical DiscriminationNon-Medical SwitchingNursing Home / Assisted LivingOral ParityPremium PaymentsPrior AuthorizationSocial Security DisabilityStep-Therapy / Fail FirstSuicide / Self-harmTransparency in Health CareUnderserved CommunityVeterans Affairs Congressional District(s) AL02AL03AZ06CA13CA14CA17CA19CA27CA29CA32CA45CO07CT04CT05DL01FL06FL08FL18GA07ID01ID02IL10IL14IN09KS02LA04MA01MA04MA06MA09MD04MD05MD07ME01MI08MI11MN03MO05MO06MS04NC03NC04NC08NC09NC12NH02NJ04NJ05NM03NY10NY12NY14NY16NY20NY27OH11OK05OR01OR04PA01PA17SC01SC02TN02TX03TX09TX19TX21TX32VA01VA06VA07VA08VA09VA10VA11VT01WA04WA07WI01WI02WI03WI04WY01 Click on pins to view stories. 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Using my mobility aid just to be taken seriously by doctors Lupus – dead woman walking Letting Art Into My Life Advancing Access to Precision Medicine Organically Grown Advocate – Harmed by Breast Implants 2-time Stroke Survivor told by doctor, “I Can’t Afford to See You” Prader-Willi-Syndrome: fight for my son, fight for my community A Family of Color Repeatedly Misdiagnosed and Mistreated For Jim: Advocating for Cancer Patients Everywhere Michiganders Need Copay Accumulator Reform X-Linked Hypophosphatemia Robbed by Copay Accumulator practice From Feeling Alone with IBD to Building Communities with IBD Young Lupus Patients Need a Voice Too Crohn’s Disease and Ostomy Warrior Working to Help all IBD Patients Smiling Despite the Pain Covid made it hard to get the surgeries I needed Cancer took my husband and my siblings – that is why I advocate Dire Need for Trauma Awareness in Providers X-Linked Hypophosphatemia and Copay Accumulators Step therapy and Crowning Lupus Neuromyelitis Optica Spectrum Disorder and Step Therapy Mitochondrial disease led me to create Rare New England Mitochondrial in Minnesota Copay accumulators rob treatments from Michigan patients Trying to empower and educate others like myself The long road to acceptance Where I find hope despite a corrupt healthcare system In jail because they couldn’t pay ambulance fee Migraine led her to a life of advocacy Cancer is not a death sentence My own disability woke me up to a life of advocacy Devics Disease Is Not Multiple Sclerosis Devic’s Disease: Knocked down, I got back up The Long Arm of the Opioid Crisis: Suffering Untreated Gaslighting Mental/Emotional Health My Autoimmune Diseases and disappointment in Western medicine A Life Defined by Caregiving and Advocacy 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 I Fight for My Dad Latest Updates New patient story by Bianca published on October 20, 2021. New patient story by Wanda published on October 13, 2021. New patient story by Carina published on October 11, 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
