Sarcoidosis was once thought to be an uncommon condition. It’s now known to affect tens of thousands of people throughout the United States. Because many people who have sarcoidosis have no symptoms, it’s hard to know how many people have the condition.  There is no known way to prevent sarcoidosis.

Sarcoidosis (sar-’koi-do’-sis) is a multi system disorder of an unknown origin that predominantly affects the lung and intrathoracic lymph nodes. Sarcoidosis involves inflammation that produces tiny lumps of cells in various organs in your body. The lumps are called granulomas (gran’-u-lo’mahs) – cells that clump together. In affected organs and sarcoidosis lesions, these tiny granulomas grow and clump together making many large and small groups of lumps. When granulomas form in an organ, they affect how the organ works.

Willie was a husband, son, father, grandfather, coach, mentor, friend, 2nd father to many, and Head Usher at his church at the time of his death.  His absence leaves a huge void in the lives of hundreds.  WSSG is our way of keeping his memory alive.  We are dedicated to Advocating for a CURE!  We hope the information, support, friendship and love provided here will assist other victims of this deadly disease and their loved ones.

In the early 1980’s our family began walking down a road we could never have imagined. During this time our father Willie Wright was diagnosed with Sarcoidosis.  He immediately began having serious lung complications even the collapse of one lung.  Not far behind him in the mid 90’s his daughter Terri was diagnosed after some noticeable skin irritations, and vision problems.  And even though no genetic connection has been formally made his middle daughter Sheryl was diagnosed after a scare of possibly cancer in her abdomen area.  This is the story of how the Wright Sarcoidosis Support Group began.  Unfortunately there is no cause or cure for this disease and our story does not have a happy ending.  We lost our father on December 10, 2009 after a three week battle in ICU, where doctors and medical staff provided every option they could for a very vibrant 74 year old husband of 51 years to Willia Wright and father to three beautiful daughters, Terri, Sheryl and Diane and of course grandfather to the his grandsons: Anthony and David.

This loss created a void in all of our lives and we immediately vowed to fight this disease, inside and out!  We gathered our friends and family and began planning what we wanted to accomplish – FINDING A CURE!  Our organization is dedicated to providing support to other victims of this disease and their family and friends and to support research of other organizations.  Terri and Sheryl are in and out of remission.  Terri is a retired law enforcement officer and Sheryl is disabled due to the disease.  There is not a day that goes by that we don’t reflect on the ultimate sacrifice of our father to Sarcoidosis and we won’t stop educating the community, seeking alternate treatments, or raising funds to find a CURE!  Sarcoidosis is a deadly disease and we need your help to find a CURE!

Ever met a person, and felt that you had known him all of your life?  Have you ever had a friend, who was always there for you?  Have your father and grandfather always stood by to ensure that all the best was provided for you?  And can you imagine being married to your best friend for more than 51 years?  Willie L. Wright was all that and more to our family and hundreds of his friends across the community-at-large.

Over a period of time he was struck down by Sarcoidosis, in almost textbook style.  Forty years ago he had a biopsy on a spot found on his lung, the biopsy came back benign.  Twenty years later his lung capacity began to decrease.  He suffered a collapsed lung and lost most of the function in that lung.  Additionally, he suffered some skin lesions and severe loss of hair.  He was finally diagnosed with Sarcoidosis.

The activities he truly enjoyed, bowling and singing, were no longer an option.  Fast forward to 2008, when Willie was diagnosed with COPD and placed on oxygen.  Not one to worry his daughters and grandsons, the use of oxygen remained a secret for several weeks.  As the disease began an aggressive attack on his lungs, steroids were increased as were his oxygen tank levels.

One week before Thanksgiving (2009), he was hospitalized, unable to catch his breath.  Within days he was placed on a ventilator in an effort to allow his body to rest.  Sadly, he never recuperated; all of his organs began to fail within three weeks.  On December 10, 2009 he was called to heaven with all of his loved ones by his side.

As it is with so many victims of this disease, he was misdiagnosed.  Since there is no cure or treatment plan, he was treated by multiple medical specialties for whatever was most prominent.

The WSSG was organized in his memory and in honor of those of us who battle this disease everyday.  We will never forget his smile, his laugh and the love he gave unconditionally.  He would fight for us and though he will not reap the benefits of the war we are declaring against Sarcoidosis, we will fight in his memory.

What Is Sarcoidosis?

Sarcoidosis (sar-koy-DO-sis) is a disease of unknown cause that leads to inflammation. It can affect various organs in the body.

Normally, your immune system defends your body against foreign or harmful substances. For example, it sends special cells to protect organs that are in danger.

These cells release chemicals that recruit other cells to isolate and destroy the harmful substance. Inflammation occurs during this process. Once the harmful substance is destroyed, the cells and the inflammation go away.

In people who have Sarcoidosis, the inflammation doesn’t go away. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body.

Overview

Sarcoidosis can affect any organ in your body. However, it’s more likely to occur in some organs than in others. The disease usually starts in the lungs, skin, and/or lymph nodes (especially the lymph nodes in your chest).

The disease also often affects the eyes and the liver. Although less common, Sarcoidosis can affect the heart and brain, leading to serious complications.

If many granulomas form in an organ, they can affect how the organ works. This can cause signs and symptoms. Signs and symptoms vary depending on which organs are affected. Many people who have Sarcoidosis have no symptoms or mild symptoms.

Lofgren’s syndrome is a classic set of signs and symptoms that is typical in some people who have Sarcoidosis. Lofgren’s syndrome may cause fever, enlarged lymph nodes, arthritis (usually in the ankles), and/or erythema nodosum (er-i-THE-ma no-DO-sum).

Erythema nodosum is a rash of red or reddish-purple bumps on your ankles and shins. The rash may be warm and tender to the touch.

Treatment for Sarcoidosis also varies depending on which organs are affected. Your doctor may prescribe topical treatments and/or medicines to treat the disease. Not everyone who has Sarcoidosis needs treatment.

Outlook

The outcome of Sarcoidosis varies. Many people recover from the disease with few or no long-term problems.

More than half of the people who have Sarcoidosis have remission within 3 years of diagnosis. “Remission” means the disease isn’t active, but it can return.

Two-thirds of people who have the disease have remission within 10 years of diagnosis. People who have Lofgren’s syndrome usually have remission. Relapse (return of the disease) 1 or more years after remission occurs in less than 5 percent of patients.

Sarcoidosis leads to organ damage in about one-third of the people diagnosed with the disease. Damage may occur over many years and involve more than one organ. Sarcoidosis can be fatal. Death usually is the result of complications with the lungs, heart, or brain.

Poor outcomes are more likely in people who have advanced disease and show little improvement from treatment.

Certain people are at higher risk for poor outcomes from chronic (long-term) Sarcoidosis. This includes people who have lung scarring, heart or brain complications, or lupus pernio (LU-pus PAR-ne-o). Lupus pernio is a serious skin condition that Sarcoidosis may cause.

Research is ongoing for new and better treatments for Sarcoidosis.


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From: Michael A Herron, M.D.
Subject: Mr Willie L Wright

Mr Wright was a wonderful human being and a shining example of what a good father should be.  We should do everything when can to stop Sarcoidosis in its tracks.

In Loving Memory of "Wright"