By MZBIGGREDD · January 2, 2014 at 6:42 pm · 11 replies
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The Importance of Sarcoidosis Awareness
Its Not a Crime to Recognize…Sarcoidosis in all its many forms.
Sarcoidosis (pronounced SAR-COY-DOE-SIS) the Silent Killer!
S A R C O I D O S I S
S is for spirit, with which we battle you
A is for attitude, it helps to see us through
R is for resilient, for we shall not give in
C is for conquer, the cure someday we’ll win
O is for often, the drugs we have to take
I is for indefinite, for choices we will make
D is for doctor, those who try to do some good
O is for overwhelming, symptoms not well understood
S is for severe, a chronic illness with no pause
I is for incredible, to date – still no known cause
S is for sharing, in unity – we are strong and our fortitude shall see us through, the cure will come along.
I as a suffers of Pulmonary Sarcoidosis since 1995 I am now in Stage 3, I have made it my major priority and mission to be my own best advocate, while learning myself and my body completely, Learning what my trigger points that can cause a life threatening flare up. I am as many others are determined to help educate, share and teach others to find their voice, take a stand to fully get in this fight to help take control and save their own lives.
I like many others want to give all we can to offer Education, Support, Help, Understand, Personal Testimonies, Compassion, Listening Ear, Prayers and much needed Awareness to Sarcoidosis patients, their Families, Friends, Caregivers, Health Care Professionals and so many others about the serious consequences of Sarcoidosis. I as so many others want to bring much needed Support, Advocacy, Awareness, Education and Advocacy about this Life Threatening, Debilitating, Life Altering Silent Killer Disease. Because I am living with Sarcoidosis on a daily basis, I make it a habit to maintain a Positive Fighting Spirit, for I am a Warrior and I am Determined and I am Empowered to Serve.
As just one of the many Sarcoidosis suffer, it hurts, frustrates and annoys suffers to hear others who have no ideal what our journey is life to hear, “Wow but you don’t look sick.”
Sarcoidosis was first identified over 100 years ago. Sarcoidosis ranks among the top misdiagnosed illnesses and is one of the least understood. To this day there still is NO CURE, NO CAUSE, and NO PROVEN TREATMENT that works! This disease holds no boundaries! Sarcoidosis does not discriminate and NO ONE is exempt. It can happen to anyone, anywhere, anytime in their life! Anyone can get Sarcoidosis, and it occurs in all races and in both sexes. Nevertheless, the risk is greater if you are a young black adult, especially a black woman, or of Scandinavian, German, Irish, or Puerto Rican origin.
Sarcoidosis is a systemic inflammatory disease that can affect any organ, this is a neglected, chronic and disabling disease. Sarcoidosis and Cancer may mimic one another, making the distinction difficult. There are tens of thousands of Americans nationwide and around the world who are afflicted with this disease. Yet currently there is no cure, no definitive identification of exactly what causes Sarcoidosis, no known measures to prevent it, and many people who have Sarcoidosis do not exhibit any symptoms. Even when there are no symptoms, a doctor can sometimes pick up signs of sarcoidosis during a routine examination, usually a chest x-ray, or when checking other complaints.
Because Sarcoidosis can escape diagnosis or be mistaken for several other diseases, we can only guess at how many people are affected. Sarcoidosis is often mistaken for other diseases, such as multiple sclerosis, lupus, rheumatoid arthritis, cancer, and tuberculosis. Not all patients with Sarcoidosis are alike, and it is important that someone who knows you as a whole person evaluates your situation.
There are two types of Sarcoidosis – Acute and Chronic
Acute Sarcoidosis is where the symptoms appear quickly and can clear (remission) without treatment within a few years.
For Chronic Sufferers the onset is more gradual but symptoms caused by the damage can last for years and frequently for life. In many patients who suffers Sarcoidosis, also the sufferer may suffer from many other secondary conditions. Symptoms can be very debilitating and life threatening. Sufferers may go in and out of remission and require continued monitoring.
It’s important that people with Sarcoidosis and their loved ones learn all they can about the disease, its potential health issues and document how it affects them individually from day to day. The best way we can support individuals who suffer from the disease is to educate the public and increase the understanding of this disease between its victims. Receiving a proper diagnosis begins with public awareness. Education is one of our best weapons against this debilitating disease. This designation is an important step in the right direction in our efforts to heighten Sarcoidosis Awareness.
April Is National Sarcoidosis Awareness Month with the colors of Purple and White. Many people often ask; “What can I do to help make a difference with Sarcoidosis?” There are three very important elements to making strides with Sarcoidosis:
#2: Education, the last but most important is
#3: Sarcoidosis Research
Due to this overwhelming lack of medical knowledge about Sarcoidosis that exists, the true number of people who are affected by this disease and the origin or cause of Sarcoidosis will continue to be a mystery!
What can patients do to support Sarcoidosis research?
It’s simple . . . Learn, Share, Participate!
Together we can FIGHT for a CURE! Even if you’ve never heard of this debilitating disease or don’t know anyone personally, that don’t have to stop you from helping! Any one person can!!! It’s simple to raise awareness. Just help spread the word. You have a blog, post it! You have e-mail, send it! You have a cell, text it! You have Twitter, Facebook, Instagram, Tumblr or any other social media site, just click the like button and care enough to share it!
Every small gesture adds up, if everyone steps up! Without your support, there are NO grants, studies, research, trials… We need YOU to take a STAND and FIGHT for Us who is in the fight of our lives against Sarcoidosis. By joining in on the fight you will be help to Make A Difference around the world for everyone touched by Sarcoidosis.
Please stay in the knowledge that there are many diseases in this world. Become aware of this one, its symptoms and warning signals. By simply taking the time to become educated you will be Making a Difference! Please HELP by Empowering Communities through Sarcoidosis Education and Awareness.
Here are five tips that can help you in being aware of how to support those affected by Sarcoidosis:
• Learn more about all aspects of the disease Ssarcoidosis by first visiting the Foundation for Sarcoidosis Research and others websites.
• Make a financial donation this month to your favorite nonprofit that is providing services or doing research in this area.
• Offer to help a person or their family who is suffering from this disease – sometimes even the kindest gesture of making a meal, offering to take the children for an afternoon can make a world of difference.
• Recognize that people suffering from this disease have a compromised immune system – stay away from them if you are ill or suffering the effects of a contagious illness; in other words, don’t spread the germs!
• Share information with your doctor or medical provider so they are aware of this disease; a little information could change a life or in this case a diagnosis
Bonus Tip: Sometimes we need a HUG, not just a K.I.S.S.!
Sarcoidosis Sufferers don’t let your Sarcoidosis Prognosis knock you out! Get mad and get in this war to Fight Back!
We gain strength, courage and confidence by every experience in which we decide to stop and look fear right in the face. Courage doesn’t always roar. Sometimes courage is a little voice from a Warrior’s Spirit at the end of the day that says “I will try again tomorrow!
In reality Sarcoidosis really does change you because we only have 2 options, either we give up or we keep fighting like hell and best believe that Warrior Spirit reminds us that Giving Up and Giving In is NOT an Option. For it is our goal is to live a full life no matter what happens. Whether our Sarcoidosis goes away, flares-up or whether we pass away, the important fact is that the days we have left…we lived!
Let stand Together in this fight to … Find It! Fight It! Cure It!
Support Sarcoidosis Awareness – RainCloudMom