#education
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Tissue-Nonspecific Alkaline Phosphatase: Unraveling Its Significance in Health and Disease
In the realm of biology and medicine, enzymes play a vital role in various physiological processes. Tissue-nonspecific alkaline phosphatase (TNAP) is one such enzyme that holds immense importance in human health and disease. This blog post aims to shed light on the nature of TNAP, its functions, and its significance in maintaining overall well-being. Understanding…
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Exploring the Overlap of Ehlers-Danlos Syndrome and Hypophosphatasia
Introduction: Ehlers-Danlos Syndrome (EDS) and Hypophosphatasia (HPP) are two distinct medical conditions with their own set of symptoms and complications. However, in some cases, there appears to be an overlap between the two disorders, leading to diagnostic challenges and potential implications for patient management. In this blog post, we will delve into the intersection of…
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What is Hypophosphatasia?
Hypophosphatasia (HPP) is a rare genetic disorder that affects bone and dental development. It is caused by mutations in the ALPL gene, which codes for the tissue-nonspecific alkaline phosphatase enzyme (TNSALP). TNSALP is involved in the mineralization of bones and teeth, and a deficiency of this enzyme can lead to a wide range of symptoms.…
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My Journey with Strensiq for Hypophosphatasia.
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…
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Making IBD Visible: IBD Looks Like Me.
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…
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Reddit Ask Me Anything (AMA)- Crohn’s & Colitis Awareness Week!
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…
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WeGo Health Activist Awards.
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…
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Types of IBD Remission.
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…
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Let’s Talk About Poop. (Fecal Microbiota Transplant and IBD)
Did that title pull you in? Good! That was my plan! At this point, I am sure most of you have at least heard of the term “Fecal Microbiota Transplant” (FMT) or “Fecal Transplant.” It is currently being studied as a potential treatment for IBD patients so I want to do a series of blog…
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What is Next? A scientific approach.
So recently I have been trying to figure out what we could do to help more IBD patients and to keep our social media out reach moving forward. I always like to ask our community what do they want to see? What can we do better or what is something new that you…