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.
Genetic and Cellular Studies Carve New Pathways to Treating Ovarian Cancer By Kathleen Hoffman, PhD, MSPH Ovarian, fallopian tube cancer and primary peritoneal cancer are often grouped under the name epithelial ovarian cancer. When classified as subcategories of ovarian cancer, primary peritoneal cancers and fallopian tube cancers are considered rare. The incidence rate of primary peritoneal cancer is estimated to be 6.78 per million.1 Fallopian tube cancers have been thought to be “very rare,” accounting for 1-2% of all gynecologic cancers.2 Because these cancers are usually advanced by the time they are diagnosed, it has been difficult [...]
Cancer, COVID, and Vaccinations: The Patient Perspective at ASCO 2021 By Kathleen Hoffman, PhD, MSPH Inspire is presenting the results of two separate surveys during the American Society of Clinical Oncology® (ASCO) virtual conference being held June 4-8. Chosen from the more than 5,400 abstracts submitted for the 2021 ASCO Annual Meeting, the studies focus on COVID-19 vaccine hesitancy and reactions to the vaccine among patients with cancer. Inspire’s cancer community Inspire has almost one million members who are patients with cancer and their caregivers. In the last 15 years, over three million posts (3,555,105) have been [...]
Promising New Therapies for Treating Atopic Dermatitis By Kathleen Hoffman, PhD, MSPH People who do not have atopic dermatitis (AD), also called eczema, can have the simple experience of having an itch relieved by scratching. For people with atopic dermatitis, this is a heavenly fantasy. For AD sufferers, the symptom most of them have in common is areas of skin with unrelenting itching, burning, or otherwise painful discomfort. I am absolutely miserable with eczema on my face. ... I think I have it under control, and then ,bang, there it goes again - the unbearable itching, stinging, [...]
In Search of Answers: Head and Neck Squamous Cell Carcinoma (HNSCC) By Kathleen Hoffman, PhD, MSPH The basic dry facts about Head and Neck Squamous Cell Cancer (HNSCC) are that it is a cancer of the mucosal lining of the oral cavity and larynx; typical treatments include surgical intervention, chemotherapy, radiation, and, more recently, immunotherapy, followed by various kinds of rehabilitation and reconstruction. However, let’s make it real. A member of Inspire’s Head and Neck Cancer Alliance community describing their Survivor Story said: I am [an] oral cancer (Tongue cancer) survivor (my age is ___ years). In [...]
I was diagnosed with Ankylosing Spondylitis at 15 By Kathleen Hoffman, PhD, MSPH Imagine a patient with inflammatory joint pain. You’re probably not visualizing a young person in his 20’s or teens with severe lower back pain, but that’s a likely scenario for sufferers of ankylosing spondylitis (AS). One Inspire member said: I was diagnosed with AS at 15 years old ... in my case it took an emergency room visit when I could hardly move and freaked out. I had an amazing House-style emergency room doctor who solved the mystery by ruling out injuries/mechanical problems and [...]
The KRAS Mutation: Cancer Patients Search for Hard-To-Find Trials By Kathleen Hoffman, PhD, MSPH There is new hope for cancer patients with the mutated protein KRAS G12C, an oncogene previously thought to be “undruggable.”1 KRAS is one part of the RAS-RAF cellular signaling pathway that drives a cell to multiply, and its mutations are commonly present in pancreatic, colorectal, and non-small cell lung cancers (NSCLC), all of which have a poor prognosis.2 In 2013, the NIH National Cancer Institute founded the RAS Initiative for exploring approaches for attacking the proteins encoded by mutant forms of RAS genes, [...]