When I was diagnosed with my ultra-rare genetic disease Hypophosphatasia back in August 2017 I was told there was only one approved medicine to treat the disease and not every patient is eligible to get on the treatment. The main reason is that the drug is only approved for patients who have a specific form … Continue reading My Journey with Strensiq for Hypophosphatasia.
The main theme of Inflammatory Bowel Disease (IBD) Awareness week (December 1st-7th) this year is making IBD visible. What does this mean? IBD is considered an "Invisible Illness" which means that even though we don't look sick on the outside, our insides show a whole different story. I can't tell you how many times I … Continue reading Making IBD Visible: IBD Looks Like Me.
Every year December 1st-7th is IBD Awareness Week which is a week dedicated to raising awareness for IBD and bringing attention to those affected by the disease. During this, there are some amazing events going on through the CCFA and other advocates that include Facebook Live Chats, Twitter Chats and much more! This year I … Continue reading Reddit Ask Me Anything (AMA)- Crohn’s & Colitis Awareness Week!
https://badges.wegohealth.com/ha-awards-2016?referrer=vfxKpQwLctOz0BFxWjHVdw https://badges.wegohealth.com/ha-awards-2016?referrer=OOD932bZgTqwhSCiXjUfWQ Every year WeGo Health puts on the Health Activist awards where you nominate a health advocate in your journey / community for an award to recognize them for making a difference in the community. This year my website,facebook page and twitter have been nominated for awards! I am extremely excited and humbled for … Continue reading WeGo Health Activist Awards.
I want to discuss remission as it pertains to IBD. Remission is the goal of every patient and every treatment plan. The terminology can get confusing because there are a few different types of remission. The goal is to familiarize you enough with these terms and not confuse you, also it is important to know … Continue reading Types of IBD Remission.