Well first off, welcome to Ashley’s Anatomy. My goal is to share experiences and a few helpful tips that I’ve learned along my chronic illness journey. If this is your first time stopping by feel free to take a look around (About Me).
In 2017, I was diagnosed with Myasthenia Gravis (MG). I remember scouring the internet looking for information on this rare disease. I decided to make things easier for everyone and compiled a list of resources that I’ve found helpful throughout my journey. This list includes helpful links to foundations, advocacy groups, and financial assistance programs for individuals with Myasthenia Gravis.
I’ve also included a section for other helpful info such as “Drugs to Avoid with MG” and dental considerations. They’re super helpful and I recommend printing them out and adding them to your hospital binder for emergencies. I’ll try my best to update this list with relevant resources.
*Disclaimer Statement: Ashley’s Anatomy is not paid or endorsed by any of the following organizations or businesses listed below in the resource guide. I do not have direct agreements or partnerships with any listed source. This guide is intended to be used to assist individuals or caregivers of someone with Myasthenia Gravis.
General Information on MG
Myasthenia Gravis Foundation of America (MGFA)
This website is full of helpful information about MG. Their goal is to increase awareness of Myasthenia Gravis, support MG’ers, and create connections for this community. I personally receive email updates from this foundation. Sometimes they host virtual seminars which is nice that they offer. I love that they share vital information about COVID-19 protocol and vaccination questions related to MG. They even have a registry (an active database of people with MG). I highly recommend joining this registry if you have MG to assist with MG research and treatment. It’s confidential.
Helpful links from MGFA:
MG United
MG United is a great source of news and information for people with Myasthenia Gravis. They aim to provide MG patients and families with information and resources. This group is very active on social media. It’s cool to know that they’re responsible for creating the first documentary series about MG called A Mystery to Me.
Helpful links from MG United:
Myaware
*For the MG’ers located in the United Kingdom
Myaware is the only charity in the UK dedicated solely to the care and support of people affected by Myasthenia Gravis. They work to raise awareness of MG and provide support for people with Myasthenia and their families. Myaware funds research that aims to find a cure for MG.
Helpful links from Myaware:
Financial Assistance
National Organization for Rare Disorders (NORD)
NORD is a patient advocacy organization. They’re dedicated to individuals with rare diseases like Myasthenia Gravis. This organization is very informative, they have a Rare Disease Database. NORD has programs and services dedicated to supporting every member of the rare disease community. I really love this organization!
Helpful links from NORD:
COVID-19 Related Financial Assistance:
I Stay Home for Rare
The name of this assistance program is “I Stay Home for Rare Fund” which aims to provide quick access to emergency funds needed by individuals or families living with rare diseases during the COVID-19 pandemic.
United Way COVID 19 Community Economic Relief Fund
United Way is helping communities respond, recover, reimagine and rebuild. They have resources in different areas to provide support for communities that have been impacted heavily by the Covid-19 pandemic.
Drugs To Avoid with MG
List of Drugs to Avoid with Myasthenia Gravis
Anesthesia & Surgery in Myasthenia Gravis Patients
Common Treatments & Side Effects
Dentistry & MG
Considerations for Dentistry & Myasthenia
I hope that the information helps you or someone you love with Myasthenia Gravis. I will update with relevant resources as I discover them. If there are sources you’ve found helpful that are not listed please feel free to comment them below or email Mail@AshleysAnatomy.com
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