#understandingmyositis

[myositis]

Our very own Lynn Lizarraga, host of our Laughter Yoga sessions, shares her diagnosis story and how laughter has become the best coping skill in her journey with IBM. Her next Laughter Yoga session will take place August 15th, at 1 PM EST. Join us! #InclusionBodyMyositis #IBM #Myositis #MyositisSupport #UnderstandingMyositis #StrongerTogether #KnowledgeInAction

[myositis]

DID YOU KNOW? Myositis is an invisible illness.  We may look healthy on the outside; but inside, our bodies are screaming with pain, fatigue, weakness, and other  debilitating symptoms.

May patients have experienced comments like, "But you don't look sick!")

[myositis]

Day 2 - Myositis Awareness, Share cheat sheet with your doctors

One of the biggest frustrations cited by Myositis support group members is the lack of knowledge of the disease by many medical professionals.  This lack of knowledge can delay diagnosis and treatment and make it difficult for the Myositis patient to convey symptoms which the doctors recognize as real.   

This is why we have decided that our main theme for Myositis Awareness Day is to educate doctors.

Let’s educate doctors about this rare disease by sending them the “Myositis Cheat Sheet for Physicians.”

We have developed the “Myositis Cheat Sheet for Physicians” which lists symptoms common to those with Myositis.   It is difficult to define Myositis in 2 pages, however, we believe we have touched on the major issues and made it simple to read, remember and retain. 

You can download the “cheat sheet” at www.UnderstandingMyositis.org. It is located at the top of the page.

We encourage you to locate doctors by specialty by going to a website such as http://doctor.webmd.com.  Select doctors who are likely to see people who have symptoms of Myositis:  Dermatologists, Neurologists, Rheumatologists, Ear, Nose & Throat Doctors, Internists, General Practitioners, Emergency Medical Physicians and Pediatricians.

This is a great way to utilize others in your area to work together to carry out this task, whether it is through KIT Groups or by contacting local Myositis patients and getting to know them while working on a cause close to our hearts. 

You can mail or deliver a hard copy of the “Myositis Cheat Sheet for Physicians” to as many doctors in your area as possible or, you can email it if you are able to get the email information from their individual websites. 

If you are able to hand-deliver the cheat sheet, we think it would make a larger impact.

Some areas have few doctors while others have many, so it may take some time to get the word out, but the sooner we get started the more doctors will begin to understand our disease.

TMA recently mailed out Myositis 101 books to 2,000 doctors in the US.   There are over 850,000 doctors in the US alone, so the focus on educating the healthcare community is just beginning. 

For those of you outside the US, we want you to be involved in this effort.  Try using an Internet search using keywords “find physicians in ___________” with your country, province, county, city or town name.

So, let's start distributing the Cheat Sheets today!

[myositis]

Are you on Google Plus? Please +1 our page to help us further Myositis Awareness! 

Help us spread Myositis Awareness by Following us on Google Plus!