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.
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.
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.
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.
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.
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.
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 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.
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.
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