Sarcoidosis

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Just read any interesting article about Sarcoidosis. They believe that

is what killed Reggie White. One of the symptoms is joint pain. Looks

like a disease that is not diagnoised but rather ignored for something

else. Just thought I share......Carol

Here is the article:

Understanding Reggie [football player/minister] White's Disease

By Reynalds

2 February, 2005

NFL great Reggie White, a committed Christian and ordained minister may

have died because of a rare respiratory disease possibly combined with

other health problems, according to a preliminary autopsy report issued

Dec. 27.

White had the disease, known as sarcoidosis, for several years, NFL.com

reported family spokesman said. He described it as a

respiratory ailment that affected his sleep.

White's (most likely) condition affected the amount of air his lungs

could hold, resulting in " fatal cardiac arrhythmia, " said Dr. Mike

Sullivan, the medical examiner for Mecklenburg County, N.C. and a

forensic pathologist, according to NFL.com

(www.nfl.com/partners/aol?http://nfl.com/news/story/8040641).

White died Dec. 26 at Presbyterian Hospital in Huntersville N.C. after

being taken there from his home in nearby Cornelius N.C.

(www.cornelius.org).

According to Trevor Marshall, chairman of the Autoimmunity Research

Foundation (www.autoimmunityresearch.org/about.htm), the first hint of

trouble, especially in males, comes during autopsy after a heart attack.

This happened, he said, with the death of Chicago sports anchor Darrian

Chapman (www.nbc5.com/health/1933594/detail.html), and almost certainly

in Reggie White's death.

Marshall said that while White's final autopsy report has yet to be

issued, the medical examiner has indicated that everything " 'fits' with

a sarcoidosis cardiac-event. "

WHAT IS SARCOIDOSIS?

But what is sarcoidosis? It's usually caused by an ongoing accumulation

of bacteria, Marshall said.

He added, " The symptoms and disabilities gradually creep up on people,

and they adapt to the illness as if it were 'normal.' Usually there is a

precipitating event, perhaps following an acute infection or a tick

bite, which causes the suffering to become unbearable, and that is the

point at which patients recognize they have a disease. "

Marshall explained how the disease progresses. " The bacteria gradually

spread through every organ in the body, from the brain, to the eyes, to

the chest, to the feet, weakening them and causing them to fail. "

Even though there's a consistent cause, Marshall said, the symptoms

still act slightly differently in each patient.

Asked why people should be concerned about what many people say is a

rare disease, Marshall said because the diagnosis is usually missed by

doctors.

Meg Mangin, director of the Autoimmunity Research Foundation, said in a

commentary e-mailed by Marshall, that while sarcoidosis is typically

described as being rare, that is not necessarily true. She said that

many people report having had symptoms for years before finally being

diagnosed with the disease.

" Death due to sarcoidosis is also likely under-reported, " Mangin said,

" because many doctors do not recognize the systemic nature of the

disease and attribute death to other causes. "

TREATING SARCOIDOSIS

Mangin said the standard treatment for the condition has not changed in

a half century.

" Patients are allowed to deteriorate without any treatment until they

have enough major organ damage to warrant the use of high-dose,

long-term, toxic and ineffective prednisone " (www.nlm.nih.gov

/medlineplus/druginfo/medmaster/a601102.html), Mangin said. " Because the

symptoms of systemic sarcoidosis are so poorly recognized, patients

suffer from debilitating pain, muscle weakness, fatigue and many other

symptoms that have a huge negative impact on the quality of their lives.

Death usually occurs in 10-20 years with or without treatment. Many

doctors believe the myth that sarcoidosis will go away without

treatment, which is contrary to the findings of the recent 5 million

dollar taxpayer-funded study of sarcoidosis called ACCESS. This

largest-ever study revealed that sarcoidosis does not resolve with or

without prednisone. "

Mangin added, " The sad tragedy of this disease is that the sarcoidosis

experts have been ignoring decades-old studies by the Center for Disease

Control and other reputable scientists, that the cause of the disease is

likely due to a strain of bacteria that can live within the cells of the

immune system. The business of medicine has pointed their research

efforts in other, more lucrative directions. "

However, according to Mangin, patient advocates led by Marshall are not

just sitting by waiting to die.

Calling what they're doing a possible " medical breakthrough of the

century, " Mangin said patient advocates are " following a safe, novel,

inexpensive treatment plan which is proving to lead to remission of this

deadly disease. "

She said that the discovery, " which involves medications already

approved by the FDA, but used in a novel way, " is also being used to

treat other autoimmune diseases such as rheumatoid arthritis, chronic

lyme disease, chronic fatigue syndrome, scleroderma, lupus and

fibromyalgia. "

Mangin said, " It takes a long time for the medical establishment to

recognize a new medical theory, especially when it comes from someone

who is no longer part of that establishment. Many physicians are using

this Marshall Protocol (www.marshallprotocol.com) with success but many

'experts' refuse to acknowledge its potential. The Autoimmunity Research

Foundation was created to help promote this lifesaving treatment by

reaching key doctors in the research community. "

EDUCATING THE MEDICAL PROFESSION ABOUT SARCOIDOSIS

That's not the only thing the Foundation is doing. Marshall said, " We

are working with the National Institutes of Health on a more informative

.... booklet for physicians and have just reviewed the draft. So

hopefully, in a few years, more physicians will understand that this is

a killer disease, not ' " one that goes away on its own.' "

Marshall has himself experienced the disease. He was diagnosed in 1978

while an academic at Curtin University in Western Australia. He said he

has x rays showing that the disease was active in his body as early as

1967, but its diagnosis was then missed by doctors.

Marshall admitted that his case is far from usual. " When I was diagnosed

I immediately started a postgraduate course in BioMedicine, " he said,

" and had some of the greatest medical minds of that time to help me

understand and manage the disease process. Which is why I was eventually

able to fully recover, after 35 years, from a disease that normally

kills in 10-20 years. "

The best way for people to get involved is to educate their doctor about

" undiagnosed chronic disease, " Marshall said. " Especially the chronic

fatigue and fibromyalgia, and understand that people suffering from

these diseases are not malingering, that these diseases are real, even

though they are so hard for a individual doc to spot, and that they kill

if left untreated. They should also understand the common features of

these chronic diseases, which, even though they bear different names,

are actually very similar and the predisposition runs in families. "

In addition, Marshall said, people should also make sufferers aware that

these diseases are being researched and conquered, and that there is a

network of concerned people willing to help who can be contacted on the

Internet.

Additional information, Marshall said, will also be available at the

group's upcoming conference of recovering/recovered patients in Chicago

March 12-13. Details of that conference are at

www.autoimmunityresearch.org/chicago2005.htm

For information on line go to www.autoimmunityresearch.org,

www.sarcinfo.com, or www.marshallprotocol.com