It just goes away…” prejudice against people with Sarcoidosis

I had to share this article that was posted today in my Inspire.com Stop Sarcoidosis group. This article speaks to the many Sarcoidosis sufferers that deal with the misinformation that is place via the internet and medical journals. As many of you know, Sarcoidosis sufferers are like “snowflakes.” We all fall under the diagnosis of Sarcoidosis, but are different in how the disease itself affects us. Please read and help us spread awareness about this debilitating disease.
Thanking you in advance
Marilyn

It just goes away…” prejudice against people with Sarcoidosis

By kulahaw · Yesterday at 9:03 Shared with the public

If you do a general search on the internet and through PubMed government medical journal articles, the most common introduction to Sarcoidosis as a disease is… “It just goes away on its own…” This is such an obvious and blatant disregard to those that suffer from the disease. If anyone of any influence on the medical community wishes to make a profound impact upon the lives of those living with Sarcoidosis would be to advocate for the removal of this attitude, an obvious prejudice that places patients at a significant disadvantage seeking treatment, getting a medical professional to “listen to you” as you describe symptoms and complications, accessing SSDI due to a plethora of disabling ailments and complications, and just informing friends and family of why you are suffering. I have been suffering from Sarcoidosis for 10 years. Prednisone cleared the lung complications after 3 years, but left me with Neuropathy and Sarcoid of the liver, that were not resolved. I live in constant pain and can gather no sympathy or compassion from medical professionals and persons close to me due to this flippant attitude towards Sarcoidosis. Sarcoidosis is still so misunderstood and misdiagnosed.

We need more advocacy!

An Inspire.com Post that I had to share… “STAND UP FOR SARCOIDOSIS AWARENESS: PURPLE POWER” by MZBIGGREDD

Stand Up For Sarcoidosis Awareness

We have two options, medically and emotionally: give up, or fight like hell. Unite for one, unite for all. After a Sarcoidosis diagnosis — whether it’s your own or that of a loved one — the right information can be one of your most powerful weapons. Sarcoidosis is often misunderstood, there are many misconceptions about this disease. But education is the best defense. Finding a cure is our goal, spreading awareness plays a role. A brighter future for all we all secure, if everyday we keep seeking a cure. As long as we have HOPE and each other to help us cope, we all can be better together.

Sarcoidosis didn’t stop me from being me, it helped me find who I am and what I want to do with my life. Time is shortening. But every day that I challenge this Sarcoidosis and all of it’s unwelcoming friends and I survive, is a victory for me. A person has 1000 wishes. A Sarcoidosis patient has one, “To Get BETTER.” Once you choose HOPE, anything’s possible. People will never truly understand what it is to fight like hell to win a battle. Not until they are faced with the words, you have Sarcoidosis.

Thousands of individuals are diagnosed with Sarcoidosis. Even those who aren’t stricken with the heart of the illness are touched in some way by the deadly disease. Sarcoidosis is something that will show how strong or weak a family, relationships and friendships really are.

“Dear Sarcoidosis, we as Warrior’s are stronger than you. You may be winning the battle but we are determined to win the war. For many Sarcoidosis comes with a lifelong battle, just like life. It comes with battle against a life threatening disease, when life is a continuous battle against the restrictions set by fear and hopelessness. It comes with life altering conditions that may shatter your world to the core. But while Sarcoidosis is a word, it is not a sentence “

Next time you feel yourself getting annoyed about your bad hair and nail day, bad traffic, shitty bosses, and screaming kids, just remember there’s somebody going through a flare-up, indescribable pain, weight gain, hair loss, loss of breath, severe depression who would welcome and gladly trade places with you. Pain is nothing new to many Sarcoidosis patients. Of all life-altering disease, Sarcoidosis is one of those which subjects patients not only to a wide range of painful and exhausting symptoms but also to a wide range of emotions.

Sometimes in our lives we reach rock bottom. We experience what we call HELL. For each of us it’s dressed up differently, but for all of us it is dark, tough and devastating. This HELL can be our awakening. Some people call it a breakdown; I believe it is a breakthrough. Being diagnosed with Sarcoidosis comes with a lot of uncertainties. It comes with a baggage that is bound to test your very character. Sarcoidosis is not the end of your life; it actually marks a new beginning. You should not let this disease rule over your life. It has to be fought, not feared. It can be handled and it can be battled with. Many people have done it, many people have survived it, and so can you. The main message Sarcoidosis patients is to convince you that You Are NOT Alone in this fight.

Sarcoidosis has threatened many lives. But must it remain a threat? Succumbing to this threat will only make you a slave of fear, fear for your life. The thing is that you can fight Sarcoidosis, no matter what form it shows up in. People have done it and do it every day. It may be a very serious disease but on the other side, spending your life with this disease allows you to realize how fragile and precious life can be.

So please keep in mind that Sarcoidosis is not a joke, so don’t treat it like it’s one. Fighting today for the chance of a cure tomorrow. Many of us may be in some form Disabled … But don’t for one minute get it twisted for we are very well Enabled! While everyone’s journey is unique, knowing that others before you have been through something similar can give you the strength encouragement motivation and inspiration you need to keep everything in perspective. We are NOT just Thriving, We are Surviving and Purple is our signature color! Life – A Race Worth Fighting For!

Purple Power!!!

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email : Webview : The Devastating Impact of Sarcoidosis

email : Webview : The Devastating Impact of Sarcoidosis.

Cold Sweats and Night Shakes

It’s 4 a.m. and I’m up with the freaking chills. Sheet, wool blanket and two comforters later cold shakes becoming controllable. Sarcoidosis SUCKS!!! Can’t wait to see Dr. Kavuru (formerly with the Cleveland Clinic, now practicing at Jefferson Hospital in Philadelphia, Pa) on Monday. Driving to another State to get answers and prayerfully help is finally relieving the stress my family has been dealing with, because of the non help/somewhat from doctors within our State. Now back to the freaking shakes. My hands are even cold whilst I’m typing this. Lord, all I ask is for prayer. I know I’ll get through this because everyone knows, I am and always will be a warrior. I may have Sarcoidosis but it won’t have me!

Just another rant from yours truly ^_~

Marilyn’s Fight for Life Let’s KICK Sarcoidosis

AWARENESS 4 SARCOIDOSIS

Sarcoidosis SnowflakeAWARENESS 4 SARCOIDOSIS

By MZBIGGREDD · January 2, 2014 at 6:42 pm · 11 replies
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Shared with the public
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:

#1: Awareness,
#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