August is Digestive Tract Paralysis (DTP) Awareness Month

Digestive Tract Paralysis (DTP) refers to a group of conditions that affect the motility, or speed in which your body digests food and liquids, such as gastroparesis (GP), chronic intestinal pseudo obstruction (CIPO), and colonic inertia (CI). I have been diagnosed with esophageal dysmotility, gastroparesis, and colonic inertia and all have greatly effected my health and lifestyle.

Gastroparesis, or paralyzed stomach, is a condition where your stomach takes too long to digest and empty your stomach. GP can be primary, secondary, or idiopathic and can range from mild to severe (little to no motility). Common forms of secondary GP are diabetic GP, Post-abdominal surgery GP, post-viral GP, and GP from eating disorders. Some symptoms of GP according to GPACT are:

Early Satiety after a few bites of food

Nausea (especially after eating)

Vomiting (often undigested food from hours or even days before)

Abdominal Pain

Hiccupping

Excessive Belching

Bloating

Weight Gain

Weight Loss

Loss of Appetite

Malnutrition

Dehydration

Heartburn or gastroesophageal reflux which is not controlled by acid suppressants

Erratic blood glucose levels

Comic of stomach and intestine by the awkward yeti

 

For me, dysmotility has hijacked my love of food and made me realize how much our culture revolves around food. Out to dinner, snacks at the movies, family meals, holidays, snacking, period chocolate eating, late night iHOP runs, and lunch breaks at work. When you can’t eat or can only eat a few types of food in small amounts, you miss out on a lot. Not to mention if certain food smells make you nauseous- my DTP friends can probably relate to being nauseous and starving at the same time. Food is everywhere. DTP is part of the reason I have a feeding tube which givesme freedom but is also a pain. in. the. ass. I have to be fed into my intestine to bypass my damaged stomach (intestines are more functioning though also damaged). This requires being attached to a tube and pump anywhere from 12 to 24 hours a day.

But DTP doesn’t just effect eating, it effects medication absorption, acidity levels, bowel control, hydration, energy levels, weight, and definitely clothing sizes (bloating is no joke). We need a cure, we are starving for a cure. While there are some treatments available they often come with difficult side effects or are invasive. More research needs to be done for a cure to be found! To donate or find out more please visit the Gastroparesis Patient Association for Cures and Treatments (G-PACT)!

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AT/Software for High School andCollege Students with Disabilities

Having a disability or being chronically ill in college comes with many challenges: time management, memory, missing class, taking notes, studying, typing papers, reading textbooks and more! While this by no means will be an extensive list, here are some applications, software, and modifications that you might find helpful broken down by task. *Note: if you have an IEP/504/ College Disability Accommodations, some of these may be available to you for free through your school or may be covered under insurance so talk to your case managers!*

Time Management:

Timeglass (Free)List of three timers in a screenshot of timeglass app

This is a simple application that allows for the use of multiple timers at once, including multistep timers, repeats, customizable icons, and a visual timer. There is a limited feature free version on iTunes.

 
VisTimer Lite (Free)
screenshot of visual timer
Another simple visual timer application that has customization options such as display size, circle color, alert sound, and time warnings. Available in iTunes Store here for free with ads, upgrade available. Compatible with iPhone and iPad.

 

 

Things 3 ($9.99 iPhone/Watch)

I have tried many to-do list-esque applications over the years and while most start off great I find I stop using them after a week or so because they are too complex, don’t sync well between devices, or don’t help. Things 3 is the exception. It has iPhone, iPad, Apple Watch and iMac/Macbook compability, iCloud, Reminders and calendar syncing, it clean and easy to use and helps me immensely with homework, projects, things I need to buy, and my “remind me to think of…”. It is available here.

screenshot highlighting the upcoming feature of Things3 appscreenshot of start page of things3 app
Why I love it:
  • items are easy to move, categorize and mark as complete
  • a log book is kept for your completed items for the inevitable “oh shit I didn’t actually do that” moments
  • it syncs well with devices
  • it syncs with iOS Reminders, Calendar (including google), iCloud, and various devices flawlessly
  • You can set due dates, reminders, and assign a time to complete it
  • You can make subcategories
  • It helps a lot with packing and grocery lists too

Taking Notes:

Microsoft OneNote (Free)

Microsoft OneNote is part of the Office365 suite and is like Word, Powerpoint, and a Notepad combined. It offers the users to create subject sections, draw freehand, add tags such as “question” “to-do” or “follow-up”, simultaneously record and take notes, highlight, change page color, and more! Additionally, if used on Windows, “Learning Tools” is a free package download that includes features such as text-to-speech, focus mode, font-spacing, page coloring options, reading tools for low vision, dyslexia and other print disabilities, and more! I find OneNote to be the most useful one touch screen devices, especially for working out things like math problems that are hard to type out correctly or quick sketches. OneNote is also integrated with Office Lens (below).

screenshot of OneNote application               screenshot of One Note app

Notability ($9.99)

screenshot of notability app on ipad

I have only just started using Notability by Ginger Labs instead of OneNote and while the two applications have large amounts of crossover in terms of functionality, I prefer Notability’s design as well as ease of integration of pictures, better functionality of audio recordings, more functional highlighter, and overall more functional to use and sync.

Writing/ Reading

Wrise ($59)

Wrise is an accessible word processor for Mac that includes word prediction, text-to-speech, tags, and an export to iTunes feature. It is made by Assistiveware and is switch compatible. It also has tools to help people who struggle with similar sounding words, spelling, and reading.

Dragon Dictation (Naturally Speaking- $69.99)

Dragon provides one of the best speech recognition/dictation softwares out there. For those with fine motor issues, hypermobility in fingers, or who just prefer to talk rather than type, this is an amazing software. Dragon works with most common word processors (Word, Notepad etc) and can also be integrated into social media and web browsing.

Studying

Quizlet (Free)

Quizlet is a free study tool that allows the user to make e-flashcards, practice tests, and learning games all from a study set. The free version allows for pictures to be used on flashcards as well but you are limited to a small database. Additionally, study sets can be shared with classmates, worked on collaboratively, or you can search for pre-made study sets by other users. Some of the really beneficial tools of quizlet are: web based with app options, several different modes for learning from traditional “flashcards” to an adaptive learning course that prepares you for your exam. As someone with a learning disability, the ability to have the cards/ questions read to me when I want to is a major plus.

Crash Course Videos (Free)

These videos are fantastic! While you are limited to the topics they cover, I find them informational and think they do a great job of summarizing and presenting information without being too complex. These are great reviews for science courses, history, and other introductory courses. Also just fun to watch to learn something new. They even have videos on study skills!

Khan Academy (Free)

For more specialized informational needs, especially in math and science, Khan Academy does a good job of summarizing, providing examples, and covers more discrete topics.

Other

Office Lens (Free)

Office Lens is a free mobile application (integrated with OneNote) that gives you a scanner and optical character recognition (OCR) in one application — and for free. I use this app all the time!

Things it can do:

  • take a picture of a whiteboard at an angle, auto-crop it, and perform OCR (scans and converts characters to type)
  • take a photo
  • take a picture of a business card, crop it and perform OCR
  • save anything you snap to camera roll, OneNote, PDF, email attachment and more
  • scan and read a document to you
  • scan a document, perform OCR, send document to OneNote, then edit the document
  • compatible with VoiceOver and switch access
    screenshot of note and keeble keyboard

Keeble Accessible Keyboard ($24.99)

Another product of Assistiveware, Keeble is for anyone with vision issues, limited use of hands, dyslexia, and switch users this app is an accessible keyboard that can be added just like a foreign language or emoji keyboard and allows for customization of color, font, word prediction, quick phrases, auditory feedback (speaks what you type), Open Dyslexic font, ALL CAPS, and arrangement (ex. switch user making keyboard in frequency order as opposed to QWERTY).

 

 

Hope some of this helps!

College a cycle chart

 

 

#rarediseaseday

Wednesay is Rare Disease Day 2018! This is a day dedicated to people who live with rare diseases, awareness of rare diseases, fundraising for research, treatments and cures, and a day for those of us with rare diseases to share our stories. graphic about rare disease day with logo

Living with a rare disease can be incredibly isolating and at times, frustrating, scary and  challenging. You get used to knowing more (or anything) about your disease even when talking to medical professionals. You get anxious trying new things or going new places in case something happens and the medical staff don’t know your condition. Every year during rare disease day I strive to spread awareness not only for rare diseases (most of which have no cure), but also for orphan drugs and the researchers and companies supplying them. Orphan drugs are drugs that are designed for a problem or disease that is rare. They often struggle to find funding and complete clinical trials and most do not get through the trial phase. Additionally, if these medications or therapies do make it past clinical trials, they are often ridiculously expensive (think >$10,000).

For a list of known rare diseases click here

 

rare-disease-cloud-e1444332661951.jpg

International Day of Acceptance

Happy International Day of Acceptance!

Today, and every day, I challenge you all to inclusion, acceptance, and understanding. I challenge you to make a new friend, communicate in a new way, expand your knowledge and experience and above all, be kind. Ask questions, do research, and do not ignore differences. Lets start 2018 with more open dialogue because everyone deserves to feel loved and accepted.

Here’s what some other people say about inclusion and acceptance:

“Coming together is a beginning: keeping together is progress; working together is success.” -Henry Ford

“Love isn’t a state of perfect caring. It is an active noun like struggle. To love someone is to strive to accept that person exactly the way he or she is, right here and now.” -Mr. Rogers

“You are imperfect, you are wired for struggle, but you are worthy of love and belonging.” -Brene Brown

“The world is no real home without all of us here.” -Brian Andreas

international-day-of-acceptance.jpg

 

Alphabet Soup that is Mast Cell Disorders

Once you’ve racked up enough diagnoses and spent enough time in hospitals the lingo starts piling up and it can get confusing but I held on. Until I got to mast cell disorders and mmmaaannn it is alphabet soup up in here. MCAD, SM, ASM, IgE, HSCs, H, UFH, DAMPs, PAMPS, ATP, TNF, and more! The good thing is you could read one article about this stuff, memorize it and sound REALLY smart rattling it back off at some party. Furthermore, mast cell disorders are not well known, relatively newly discovered, and effect each patient differently. Simple right?

 

diagram of the role of histamine

So here is my attempt to spell (badumchh) it out for you guys. If you haven’t already, read my intro posts to mast cells here.

Types of Mast Cell Disorders 

  • Mastocytosis (rare)
    • Cutaneous Mastocytosis
    • Indolent Systemic Mastocytosis
    • Systemic Mastocytosis with clonal hematologic non-mast cell lineage disease
    • Systemic Smoldering Mastocytosis
    • Aggressive Systemic Mastocytosis
    • Mast Cell Leukemia 
    • Mast Cell Sarcoma
  • Mast Cell Activation Disorder (MCAD)
    *note: Mast Cell Activation Disorder and Mast Cell Activation Syndrome (MCAS) are the SAME disorder BUT they are not the same as the term “Mast Cell Disorders” which is an umbrella term for Mastocytosis and MCAD*

Difference between Systemic Mastocytosis (SM) and Mast Cell Activation Disorder (MCAD)

*note again: I don’t know enough about other forms of mastocytosis to formulate anything useful*

When looked at basically, the main difference between SM and MCAD is MCAD patients have the normal amount of mast cells in their bodies, they are just hyperactive and hypersensitive vs SM patients have too many mast cells throughout their bodies and they build up in various organs and cause issues. Symptoms of both can be identical and like most conditions, follow a spectrum from mildly affected to severely affected and can easily be life-threatening. High risks for both include anaphylaxis, severe bleeding from heparin release, seizures, organ damage from mast cell accumulation, even multiple system failure in severe cases. 

Common Treatments and Therapies

*note: I do not know of everything, this list is by no means exhaustive*

  • H1 Antihistamines (stabilize one type of histamine, mainly hives, headaches, nausea): hydroxyzine HCl (Atarax), diphenhydramine (Benadryl), cyproheptadine (Periactin), cetirizine (Zyrtec), levocetirizine (Xyzal), fexofenadine (Allegra), loratadine (Claratin), desloratadine (Clarinex)
  • H2 Antihistamines (stabilize a different type histamine, mainly GI): famotidine (Pepcid), Nizatidine (Axid), Ranitidine (Zantac)
  • Mast Cell stabilizers: cromolyn sodium (Gastrocrom), quercetin, luteolin, asprin (if allowed)
  • Leukotrine Inhibitors (respiratory): montelukast (Singulair), zafirlukast (Accolate), zileuton (Zyflo)
    *if you don’t feel like these are fictional sci-fi names by now… just wait*
  • Xolair (omalizumab): this is an injection that was originally marketed for asthma but works to desensitize the body. Must be taken at an office every time, can be very expensive and hard to get covered by insurance, can have different reactions at different times. That being said I know people who have had amazing results from it
  • Epinephrine injection (EpiPen & AuviQ) for anaphylaxis or anaphylactoid reactions
  • Diphenhydramine injection (Benedryl IV/IM) for those who react poorly to epi or as a first response for reactions or if patient can’t take oral medications

All right folks. Think that’s enough to chew on for now. More later to come later!slot hanging on to pole with text "my energy level on any given day is equal to that of a sloth on Ambien"

 

Blogs and Vlogs by EDSers

***At the suggestion of a friend I will keep two running posts to be updated randomly, this one for fellow bloggers and vloggers with EDS and another one for information, research and studies. Please let me know if any links are broken/nonfunctional or suggestions for additions!***

Blogs:

Vlogs:

 

Resources for Ehlers-Danlos Syndrome

***At the suggestion of a friend I will keep two running posts to be updated randomly, this one, for educational resources, studies, etc and another of fellow bloggers and vloggers with EDS. Please let me know if any links are broken/nonfunctional!***

General Information:

Research:

Books for EDS and related conditions”

cartoon of muscle talking to tendons and joints with title "inside my body right now"