Research reveals barriers to genomic medicine for people with EDS
Research shows people with Ehlers-Danlos syndrome face barriers to accessing genomic medicine. Social-structural barriers like long wait times to see a geneticist top the list.
Insights into patients living with seasonal affective disorder (SAD)
Seasonal affective disorder (SAD), a mental health condition triggered by seasonal changes, affects about 10 million American adults (3% of the general population). An additional 10-20% of people experience mild symptoms of SAD. Those with seasonal depression may reach out to their healthcare provider for help with the symptoms. But statistics and clinical visits do not always showcase the realities of how SAD truly affects people.
Research reveals interstitial cystitis triggers and frustrations
The Interstitial Cystitis Association (ICA) estimates that as many as 8 million women and 4 million men in America live with interstitial cystitis, also known as bladder pain syndrome or IC/BPS. Various treatment pathways exist, but they are not guaranteed to work for all individuals that are living with the condition.
Taking patient market research to the next level with PatientJourney+
The Inspire community is the largest repository of fully consented patient-created health content on the internet. By participating, Inspire members support one another through their health journeys, and often help to accelerate medical breakthroughs.
Optimizing the Patient Perspective
As medicine has evolved, so has the role of patients in their medical care. Today’s patients are more active and involved. They have questions and seek answers — from family and friends, medical professionals, online communities, social media, and yes, Dr. Google.
New Treatments for Migraines Sufferers
An estimated 39 million Americans experience migraines — that’s more than 1 in 10 people. People of all ages, including children, can develop this disabling neurological condition. They experience recurring intense throbbing or pulsing head pain, sometimes accompanied by nausea, an aura, and light and sound sensitivities.
Bladder cancer: What is a survivor?
Bladder cancer is the fourth most common cancer in men. When detected early, it is considered highly treatable.1 In 2021, about 83,000 people were expected to be diagnosed with bladder cancer (64,280 in men and 19,450 in women).2 Ninety percent of these cancers are urothelial carcinomas (UC), or cancers of the lining of the urinary tract. Unfortunately, UC may also recur.
Melanoma a “fake cancer”? — Public perception and research strides
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.
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 that people with Parkinson’s progressively lack. Despite the fact that levodopa was approved to treat Parkinson’s over fifty years ago, the updated guidelines reaffirm that levodopa combined with carbidopa is still the best first-line treatment for motor symptoms of early PD when compared with the [...]
Beating back chronic myelogenous leukemia
Beating back chronic myelogenous leukemia By Kathleen Hoffman, PhD, MSPH A patient feels fine, but a routine complete blood count (CBC) test reveals an unusually high white blood cell count. High white blood cell counts may result from many conditions, but if it’s accompanied by other signs such as high or low platelet counts and anemia, further tests may reveal that the patient has Chronic Myelogenous Leukemia, or CML. CML is a blood cancer that starts in the bone marrow and results in an overgrowth of damaged white blood cells. Most people’s diagnosis begins after a routine [...]