peer-to-peer online patient communities

Epilepsy can happen to anyone at any age

Epilepsy can happen to anyone at any age By Kathleen Hoffman, PhD, MSPH Seizures are frightening for those who have them, for their loved ones and for onlookers. Descriptions of epilepsy go back as far as the Sumerians in 2500 BC. Expressing awe and dread, Babylonians, in 1050 BC, called seizures “​​ṣibtu” [...]

Phase II studies for Non-Hodgkin Lymphoma show promise

Phase II studies for Non-Hodgkin Lymphoma show promise By Kathleen Hoffman, PhD, MSPH Let’s talk about lymphoma: Cancer of the lymphocytes, formed in the bone marrow and thymus that circulate in the lymph system. A previous post covered updates on research and treatments of Hodgkin Lymphoma, a cancer characterized by the presence [...]

Hope for Patients with Early Alzheimer’s Disease and Their Family Members

Hope for Patients with Early Alzheimer’s Disease and Their Family Members By Kathleen Hoffman, PhD, MSPH Losing who you are is essentially what the diagnosis of Alzheimer’s disease means. An irreversible and progressive brain disorder, it is the sixth leading cause of death, affecting over 6 million people in the US.1 The [...]

From Treatment Desert to Blooming Field of Breakthroughs: Multiple Sclerosis

From Treatment Desert to Blooming Field of Breakthroughs: Multiple Sclerosis By Kathleen Hoffman, PhD, MSPH Research prior to 2019 underestimated the prevalence of neurological diseases, and specifically Multiple Sclerosis (MS) by over one-half. A new algorithm, including health insurance claims data, determined that the population suffering from MS was not around 400,000 [...]

Will New Medication Guidelines For Rheumatoid Arthritis Improve Patient Satisfaction With Treatment?

Will New Medication Guidelines For Rheumatoid Arthritis Improve Patient Satisfaction With Treatment? By Kathleen Hoffman, PhD, MSPH Despite the advances and diversification of disease modifying antirheumatic drugs (DMARDs) to treat rheumatoid arthritis (RA), a recent report surveying current RA patients showed that the majority are not satisfied with their treatment experience. In [...]

What Are Patients and Caregivers Talking About? Lung Cancer Biomarkers

What Are Patients and Caregivers Talking About? Lung Cancer Biomarkers By Kathleen Hoffman, PhD, MSPH Since the FDA approved the first targeted treatment for NSCLC in 2003, treatment decisions for NSCLC are increasingly made based on individual genomics.1,2  There are now 20 distinct biomarkers that serve as identification points differentiating cancer cells [...]

Engaging with Non-Small Cell Lung Cancer and Small Cell Lung Cancer Patients and Caregivers

Engaging with Non-Small Cell Lung Cancer and Small Cell Lung Cancer Patients and Caregivers By Kathleen Hoffman, PhD, MSPH The word “Earth” doesn’t reflect the complexity and diversity of the planet. Similarly, the term “lung cancer” only identifies the location of the cancer. There are two general categories, non-small cell lung cancer [...]

Patient Perspectives on an Invisible Disease: Lupus and Lupus Nephritis

Patient Perspectives on an Invisible Disease: Lupus and Lupus Nephritis By Kathleen Hoffman, PhD, MSPH Imagine going to see a doctor when you are exhausted and enduring multiple kinds of pain, and they recommend a “psych” evaluation. When they “can’t find anything,” the medical professional you looked to for help decides you [...]

More Good News about Treating Multiple Myeloma

More Good News about Treating Multiple Myeloma By Kathleen Hoffman, PhD, MSPH This spring, the FDA approved a drug called idecabtagene vicleucel ('ide-cel'), a form of CAR-T cell therapy available to treat some forms of recurrent multiple myeloma (MM). Ide-cel is used to modify a patient’s own T-cells to attack the B-cell [...]

Searching for Answers to Migraines

Searching for Answers to Migraines By Kathleen Hoffman, PhD, MSPH Migraine headaches can be devastatingly debilitating: When my migraines get so bad, I stare at the wall in complete silence not letting my head touch anything. If my head touches something, it will send more pounding pain throughout my skull. Migraines are [...]