Tuesday, May 27, 2014

National Myositis Awareness Day

In 2006 the United States House of Representatives officially put their support behind the creation of a National Myositis Awareness Day. The official date was then set as September 21st.

This decision is a momentous triumph for those who suffer from this rare illness. It means that one day each year will now be specifically designated to promote awareness of Myositis. It means that more physicians, psychologists, physiotherapists, teachers, caregivers, coworkers, friends, and family members will have a greater understanding of this rare illness.
This awareness could mean increased program funding, better diagnosis, and additional treatment programs for this rare illness. It could mean that a few less individuals will have their lives stolen from them by this illness.
It means a stronger voice for those who in the past could only whisper. 


Myositis is a rare illness of the muscles. The illness itself covers a wide range of inflammatory myopathies but the four main groupings of this illness are: Dermatomyositis, Polymyositis, Inclusion-body Myositis, and Juvenile Myositis. Simplified derma means skin, poly means multiple, myo means muscle, and sitis means inflammation. So more simply put myositis is muscle inflammation that can involve inflammation of the skin or other multiple forms of inflammation.

There is often an overlap illness involved with myositis. This means that the myositis sufferer may also suffer from Interstitual lung disease, Lupus, Rheumatoid arthritis, Scleroderma, Sjogren's Syndrome, Raynaud's syndrome, or other inflammatory based illnesses.

The cause of this illness is as yet unknown although there are several theories as to why it develops. The symptoms of Myositis may include: fatigue, difficulty swallowing or breathing, muscle or joint pain, muscle weakness. Mobility issues such as difficulties reaching overhead, climbing stairs or hills, or rising from a seated position. Each case of this illness is unique to the individual, and may present itself with a distinct set of symptoms, and disease course.

Many of the individuals who suffer fro
m this illness are misdiagnosed, and as such, do not receive the early treatment that is so important for the long term prognosis of their illness. A greater awareness of Myositis, it's symptoms, and treatment can greatly reduce these delays in treatment. It is one of the main reasons why the creation of a National Myositis Awareness Day is so very important. 
September 21st is National Myositis Awareness Day.

You can help create awareness for Myositis.
Visit: http://www.myositis.org/ to find out how.

I was 26 years old when Myositis found me

Even today the rarity of this illness causes a great deal of misunderstanding to surround it, but back when I was first diagnosed, there was even less awareness. My early treatment program was plagued with a tremendous amount of misdiagnosis and misunderstanding.

I was told many times that fatigue, mental confusion, breathing, and swallowing difficulties were not a part of my illness and that I should not be experiencing these symptoms. I now know that these symptoms are a major part of this disease.

The medical community often viewed my illness in black and white rather than in the blends of gray that exists in. It seemed that I was categorized in one of two ways, I either had an illness that affected my muscle, or I had a joint disease. I was not allowed to have both aspects and yet myositis is an illness with many overlapping syndromes and symptoms.
I suffered from extreme pain, yet was told even by specialists that I was not experiencing pain because pressure applied on my inflamed joints did not cause me to cry out, (as would happen with someone who suffered from Rheumatoid arthritis). My pain was down played and I began to suffer in silence rather than risk further insults to my dignity. 

It was not until I stumbled upon www.myositis.org that I began to truly understand and to feel comfortable within my illness. I wanted to grab the pages from my computer screen and run back with them to the many professionals who had given me so much heartache when I first became ill.

Unfortunately I still run into health professionals who do not understand my illness. I no longer feel intimidated by them though. If I cannot get through the clouds of misunderstanding, and teach them to understand my illness, then I walk away. My hope is that one day the majority of health care providers will have a greater understanding of Myositis.

I struggled for years to finds a means to live with dignity and respect within my illness. Looking normal while being physically disabled can be challenging both emotionally and physically.
What Myositis Has Done To Me

My right arm no longer lowers to my side. It is believed that the muscle leading from the neck down into the shoulder has shrunk, this raises my shoulder, and pulls up my arm. The damage occurred when I worked at a call center and I kept working after my hand and arm became inflamed. 

I continued to push myself at work because I did not feel that I had any other income options. At the time I did not have a very understanding physician and he was reluctant to sign the papers that would allow me the time needed to rest and recoup from the current flare. By the time my last appointment with him occurred the inflammation in my arm and shoulder was more than obvious and the damage was done. My experience with this physician, and specialist, occurred about five years previous and I am no longer under their care. Education and awareness is definitely very much still needed for this illness.

I usually disguise my extended arm by wearing bulky clothing or by holding my arm folded across my body. My arm will come down somewhat if I do everything perfect (or in other words completely quit working and living) but it has never come down fully since I acquired it. Physiotherapy did not help, and the physiotherapist that I have since seen for it, concludes that it may never come back to me. I have myositis and this is one of the things that it has done to me.

My name is Lorelei but on the Internet I am most know as Ladymermaid. I write online. It is my profession but I also write to create awareness for the rare illness that so dramatically affects others like myself.
JO-1 Antibodies: JO-1 antibodies are a marker for people with myositis an illness that is usually referred to as polymyositis or dermatomyositis. These antibodies are also the most likely to be present in patients with interstitual lung disease...Jo1 antibodies.
Raynaud's Phenomenon: It is not visible on an x-ray. It may not even be visible to your family or your friends, or perhaps even to yourself, but you may suffer from it. Raynaud's Phenomenon is known as one of the quieter illnesses out there, but for those who suffer from a severe form of it, it's effects can be devastating. Risk of severe infection or the death of body tissue due to lack of blood flow can be the consequences of severe Raynaud's disease if it is left untreated...Raynaud's Phenomenon.

Take Time To Play - It's Important

When you participate in pleasurable activities like smiling, laughing, exercising or playing, your brain does an amazing thing and releases a little chemical message known as an endorphin. 

These endorphins are feel good messages that have the power to actually remove physical and emotional pain. They travel down the spine, and then throughout your body, sending a feeling of well being as they go. 

Endorphins not only have the ability to relieve pain but they also have the power to make you feel happy.