patient insights Archives - Page 4 of 10

Familial Amyloidosis: “So Rare You’ll Never See Anyone With It”
Patient communities, Patient insights, Patient stories, Patient-centered healthcare

Familial Amyloidosis: “So Rare You’ll Never See Anyone With It”

Familial Amyloidosis: "So Rare You’ll Never See Anyone With It" By Kathleen Hoffman, PhD, MSPH Until recently, the only treatments for a rare disease called familial amyloidosis were symptom management or a liver transplant. Not only is the disease inherited, genetic, and rare, its incidence varies widely by region: The NIH says it occurs in about 1 in 583 people in some parts of Portugal, compared to about 1 in 100,000 people in the US. Inspire members say that the path to diagnosis and treatment is long and convoluted: I was diagnosed with familial TTR Amyloidosis about [...]

Apr 2021By Kathleen Hoffman, PhD, MSPH|0 Comments

Social Media Communities: Blazing a Trail to New Cures
Patient-centered healthcare, Patient communities, Patient insights, Patient stories

Social Media Communities: Blazing a Trail to New Cures

Social Media Communities: Blazing a Trail to New Cures By Kathleen Hoffman, PhD, MSPH The press makes big news of misinformation spread on social media, but two virtual conferences last week -- Patients as Partners USA and Collaboration for Outcomes using Social Media in Oncology (COSMO) -- featured speakers who became patient advocates for their diseases after participating in social media discussion groups. These speakers found and now share valid information in health communities online, and demonstrate, yet again, how participation in social media has expanded scientific knowledge and research. The Patients as Partners USA conference, a [...]

Apr 2021By Kathleen Hoffman, PhD, MSPH|1 Comment

Heart to Heart Talks: Inspire Members and Heart Disease
Patient communities, Patient insights, Patient stories, Patient-centered healthcare

Heart to Heart Talks: Inspire Members and Heart Disease

Heart to Heart Talks: Inspire Members and Heart Disease By Kathleen Hoffman, PhD, MSPH Heart disease is the leading cause of death in the US among men and women, and for most racial and ethnic groups. Responsible for one in four deaths every year, more people die of heart disease than they do of cancer.1 “Heart disease” is a general category, but the most common kind of heart disease in the US, coronary artery disease (CAD), accounts for over half of the fatalities. CAD killed 365,914 people in 2017. Twenty percent of those who die of CAD [...]

Apr 2021By Kathleen Hoffman, PhD, MSPH|2 Comments

Menaced by COVID-19, Susceptible Individuals Counter with Vaccine Acceptance
Patient insights, Patient communities, Patient-focused drug development

Menaced by COVID-19, Susceptible Individuals Counter with Vaccine Acceptance

Menaced by COVID-19, Susceptible Individuals Counter with Vaccine Acceptance By Kathleen Hoffman, PhD, MSPH “The sickest I've ever been!" wrote a participant in Inspire’s COVID-19 HealthJourney survey about surviving COVID-19. Another went into greater detail when asked to share their COVID-19 story. I’ve had systemic lupus (SLE) and Discoid Lupus for 25 years. I’ve been on Hydroxychloroquine since my diagnosis. [In March] I woke with a strep-like sore throat, high fever, migraine, my body was in horrible pain. I called the doc. After being masked, gloved and gowned I was whisked into an isolated room, handled like [...]

Mar 2021By Kathleen Hoffman, PhD, MSPH|0 Comments

The Race to Rescue Livers: Finding Treatments for NASH
Patient communities, Patient insights, Patient stories, Patient-centered healthcare

The Race to Rescue Livers: Finding Treatments for NASH

The Race to Rescue Livers: Finding Treatments for NASH By Kathleen Hoffman, PhD, MSPH There is a race to develop drugs to treat non-alcoholic steatohepatitis, commonly called NASH. NASH, an aggressive form of liver disease causing inflammation and scarring, already affects 3-12% of the entire US population.1,2 What’s the incentive? There’s currently no approved treatment, and it can be fatal.3 The current standard of care is lifestyle changes. NASH is a more serious form of NAFLD (non-alcoholic fatty liver disease) and can result in cirrhosis.4 Related to obesity and diabetes, but not to alcohol consumption, NAFLD already [...]

Mar 2021By Kathleen Hoffman, PhD, MSPH|0 Comments

COVID-19 vaccines and vulnerable populations: Over 26K participate in ongoing study
Patient insights, Patient communities, Patient-focused drug development

COVID-19 vaccines and vulnerable populations: Over 26K participate in ongoing study

COVID-19 vaccine and vulnerable populations: Over 26K participate in ongoing longitudinal study By Richard Tsai Crowd-sourcing info for a friend: have any of you who have lupus SLE and/or discoid taken the vaccine? Which one? What were your side effects? Thanks for sharing. — Brittney Cooper (@ProfessorCrunk) March 9, 2021 COVID-19 vaccines have been released. Are people hesitant about getting vaccinated? How are people responding? How do people with comorbidities, like cancer, psoriasis, asthma or sarcoidosis feel about getting vaccinated? If they have received the vaccines, how have they responded? It is now possible to find out [...]

Mar 2021By Richard Tsai|0 Comments

Where Do You Start When Searching for Exceptional Responders?
Patient insights, Patient communities, Patient-focused drug development

Where Do You Start When Searching for Exceptional Responders?

Where Do You Start When Searching for Exceptional Responders? By Richard Tsai Before 2012, if a cancer clinical trial had only one successful remission amid a field of failures, the drug under trial was thought to be unsuccessful. We weren’t asking a key question: What made it work for that one participant? The one remission was an exceptional responder. Exceptional responders are in every clinical trial, but until whole genome sequencing (WGS) became available, it was impossible to scrutinize them. In 2012, researchers at Memorial Sloan Kettering used WGS to learn what caused the remarkable and durable [...]

Mar 2021By Richard Tsai|0 Comments

A Surprise Diagnosis: Chronic Kidney Disease
Patient communities, Patient insights, Patient stories, Patient-centered healthcare

A Surprise Diagnosis: Chronic Kidney Disease

A Surprise Diagnosis: Chronic Kidney Disease By Kathleen Hoffman, PhD, MSPH March is National Kidney Month, when communities across the country work to raise awareness about kidney disease. Not too worried? You might want to check: The CDC estimates that 15% of adults are estimated to have Chronic Kidney Disease (CKD). That’s 37 million people in the US alone. Even worse: Most (9 in 10) adults with CKD do not know they have it. You can be unaware even if you’re in serious danger of kidney failure. One in 2 people with very low kidney function who [...]

Mar 2021By Kathleen Hoffman, PhD, MSPH|1 Comment

Trying To Find More Answers About Tuberous Sclerosis Complex
Patient communities, Patient insights, Patient stories, Patient-centered healthcare

Trying To Find More Answers About Tuberous Sclerosis Complex

Trying To Find More Answers About Tuberous Sclerosis Complex By Kathleen Hoffman, PhD, MSPH Tuberous Sclerosis Complex (TSC) is a “rare” genetic disease: According to the Tuberous Sclerosis Alliance, Inspire’s community partner, “At least two children born each day will have tuberous sclerosis complex.”1 Classifying a disease that affects a million people worldwide as “rare” doesn’t comfort patients with TSC. Created by mutations in one or two genes, TSC1 and TSC2, its manifestations vary widely depending on the nature of the mutation, which is why it is called “tuberous sclerosis complex.” It’s a complex genetic disorder. It [...]

Feb 2021By Kathleen Hoffman, PhD, MSPH|0 Comments

Caregiving in the Time of COVID
Patient insights, Patient stories

Caregiving in the Time of COVID

Caregiving in the Time of COVID By Kathleen Hoffman, PhD, MSPH with contributing writer/Inspire member Peigi Chace On Inspire alone, 41,000+ members have written over 19,000 posts about Coronavirus. An Inspire Coronavirus support group has been formed. Real world voice analysis of caregiver posts on Inspire reveal the desperation caregivers have been experiencing during the pandemic. my husband is on a vent in the hospital. I haven’t seen him since the ambulance came and drove off. They can’t get him off vent which, by the way, was introduced to break through blockage in the carotid artery to [...]

Feb 2021By Kathleen Hoffman, PhD, MSPH|0 Comments