patient voice

Melanoma a “fake cancer”? — Public perception and research strides

Melanoma a “fake cancer”? — Public perception and research strides By Kathleen Hoffman, PhD, MSPH In a discussion of melanoma on Inspire, a caregiver said to fellow members: The doctors and drug companies are making tremendous strides in the treatment of this terrible disease!! Her message of hope resonates strongly today. Unfortunately, [...]

Are we moving beyond Levodopa for Parkinson’s Disease?

Are we moving beyond Levodopa for Parkinson’s Disease? By Kathleen Hoffman, PhD, MSPH In November, the American Academy of Neurologists (AAN) updated their 2002 guidelines for treatment of Parkinson’s Disease (PD) with dopaminergic drugs (drugs that improve dopamine release). The preeminent drug for treatment of early Parkinson’s, levodopa, creates the dopamine neurotransmitter [...]

“Still alive and kicking” – The importance of sickle cell disease clinical trial awareness

"Still alive and kicking" - The importance of sickle cell disease clinical trial awareness By Kathleen Hoffman, PhD, MSPH Sickle cell disease (SCD) is a rare disease: an inherited and incurable blood disorder that causes red blood cells to be misshapen and rigid, affecting their ability to provide oxygen to tissues. Their [...]

New classes of psoriatic arthritis drugs in clinical trials show promise

New classes of psoriatic arthritis drugs in clinical trials show promise By Kathleen Hoffman, PhD, MSPH Psoriatic Arthritis (PsA) is an inflammatory autoimmune disease affecting approximately one to two percent of the population. While psoriasis causes red and scaly patches on the skin, PsA creates mild to severe pain and swelling of [...]

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 [...]