Originally published by The Insighters® on October 18th, 2024: https://theinsighters.com/blog-posts/13 As I reflect on my HealtheVoices experience this year on the conference’s 10-year anniversary, I see a bastion of hope, of love, and of support for years to come. The love Johnson & Johnson and the HealtheVoices team has showered upon me is something I hold near and dear to my heart. And this year being the first year The Insighters® was able to partner has been especially meaningful to bring research opportunities forward to the patient community. I believe in inroads, in partnerships, and in camaraderie both in the patient advocacy community and amongst industry in the chronic illness…
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- chronic illness, Colorectal Surgery, Crohn's, Cultural Stigma, living with IBD, Ostomy, Stigma, Ulcerative Colitis, World Ostomy Day
How Ostomy Surgery Impacted My Life
How ostomy surgery gave Tina Aswani-Omprakash her life back and the impact these surgeries can have in IBD treatment. Originally published on IBD Social Circle’s Blog It is estimated that approximately three-quarters of Crohn’s disease patients and a third of ulcerative colitis patients will need surgery at some point or another in their disease journey. What’s often not discussed enough, though, is how many of those surgeries will lead to ostomies. So, what is an ostomy and how does it help patients with inflammatory bowel disease (IBD)? According to United Ostomy Associations of America (UOAA), ostomy surgery is a lifesaving procedure. It allows bodily waste to pass into a medical…
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Managing Crohn’s Disease and Going Back to School
In the summer of 2023, I graduated from Mount Sinai’s Icahn School of Medicine with a Master of Public Health (MPH) degree. In 2018 and 2019, as I was considering supplementing my patient advocacy work with a formal education in health, it was daunting to think how I would manage Crohn’s disease while studying and keeping up with the rigors of a graduate degree program. You see, even contemplating grad school was a huge undertaking when I was accepted into Mount Sinai’s Certificate of Public Health program in 2019. As I slowly mustered up the courage to transfer into the MPH program in early 2020, I felt scared yet hopeful…
- autoimmune disease, chronic illness, Crohn's, Emerging Therapies, living with IBD, Ulcerative Colitis
What I’ve Learned About Starting an Advanced Therapy for Crohn’s Disease
Are you getting ready to start an advanced therapy (for example, a biologic or small molecule medication) for the first time for your Crohn’s disease? Or perhaps this is round 2, 3, or 4 when it comes to trying advanced therapies to better manage your Crohn’s? Whether it’s your first rodeo or not, it’s important to know all the ins and outs so you can make appropriate decisions for your care in conjunction with your gastroenterologist. I have been there, and this is what I’ve learned about navigating my care and feeling empowered when getting ready to start a new therapy. Read more on the HealthGrades website: https://www.healthgrades.com/right-care/crohns-disease/what-ive-learned-about-starting-an-advanced-therapy-for-crohns-disease Originally Published on…
- acceptance, advocacy, chronic illness, chronic pain, Colorectal Surgery, coping with flares, Crohn's, endometriosis, extraintestinal manifestations, Irritable Bowel Syndrome, Mental Health, Pelvic Floor Dysfunction, Pelvic pain, PTSD, Ulcerative Colitis, Women's Health
When Diagnoses Accumulate – My Endometriosis Journey
Last spring, just when I had thought I had turned a corner and had many of my conditions better controlled, I developed a ton of crippling pelvic pain. Within a couple of days, I started bleeding a lot, which made no sense because I had been on hormones for years to stop my periods. Hormonal therapy was presented to me as a treatment option by Mayo Clinic’s gynecology team because I had many peritoneal inclusion cysts (scar tissue filled with fluid in my pelvis) that were wreaking havoc on my bladder before and after major surgeries done to remove my j-pouch. So, it was either hormonal suppression of ovulation or a hysterectomy at age…
- advocacy, affordable drug pricing, autoimmune disease, awareness, chronic illness, drug pricing, health insurance, pharmacy benefit manager
A Direct-to-Patient Model: How Online Pharmacy Marley Drug is Revolutionizing Drug Pricing
Sponsored by Medicure’s Marley Drug. All thoughts & opinions are my own. As patients, have you ever wondered if forgoing health insurance could perhaps save us money on prescription drugs? I honestly hadn’t considered it and this concept blew my mind when I first heard about it. For me, it always seemed like a no-brainer: go through my insurance policy to get access to prescription medications so I can contribute towards deductibles and meet my out-of-pocket costs many months later. But that can take forever and cost quite a lot of money…The reality is we might not have to do that and it might sometimes save us money to bypass insurance. I…
