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” translated as “possession” and ṣabātu, “to seize” as in being possessed or seized by the gods.1 Although we still use the term “seizure,” today, these events are now understood. Arising from a disruption in the delicate balance between the internal and external environment of a [...]

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 of abnormal cells called “Reed-Sternberg” cells.1 Non Hodgkin Lymphoma (NHL) is any type of lymphoma that isn’t Hodgkin Lymphoma. Four percent of the cancers diagnosed in the US in 2021 are expected to be NHL, with about 81,560 new diagnoses.2 With over 60 different types [...]

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 disease profoundly impacts those who are diagnosed as well as their loved ones: I am writing today because I'm having a hard time accepting my husband's diagnosis of Alzheimer's Disease. He is only [age] and has no family history of the disease. . . They [...]

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 but actually closer to one million (913,925).1,2 This discovery continues the forward progress begun in 1981 when the first MRI pictures of a brain affected by MS were produced, revolutionizing MS diagnosis. Eleven years later, in 1992, the National Multiple Sclerosis Society funded the first [...]

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 a study of 258 patients, all of whom were taking at least 1 DMARD, only 26% were satisfied with the results of their treatment. In fact, 43% reported taking pain relievers daily or almost daily, and 44% said that they were currently having a flare.1 [...]

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 from healthy cells and distinguishing one expression of cancer from another. Science has progressed from identifying tumor cells on a slide to genetic and biochemical identification of NSCLC’s driving agents. Pharma companies are developing and improving increasingly targeted treatments.3 The science is also revealing just [...]

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 (NSCLC) and small cell lung cancer (SCLC), differentiated by cell size, characteristics, treatments and prognosis. Genetic research continues to differentiate lung cancers at a molecular level, revealing subtypes within those categories, creating opportunities for increasingly targeted therapies. For example, since eight driver mutations have been [...]

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 must be making it up. Many patients with conditions that mimic other disorders describe facing this challenge. Systemic Lupus Erythematosus (SLE or lupus) is one such condition. Members of the LupusConnect Support Community on Inspire describe going through Herculean efforts to find help, only to [...]

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 maturation antigen (BCMA) present in myeloma.1 Multiple myeloma is a rare chronic cancer of the blood plasma that accounted for only 1.8% (32,000) of all new cancer cases in the United States in 2020, with approximately 12,410 deaths expected in 2021.1,2,3 To give an idea [...]

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 a widespread source of disability worldwide, with one systematic review of US government health studies finding 15.3% of Americans reporting a severe headache or migraine in the past three months.1 Three percent of all emergency room visits are for severe headache. Treating them remains difficult, [...]