Sentinel Article,Carlisle,PA, Dec.10,2009

Religion
Enola
Enola man battles Cogan's
John Stouffer had his leg amputated this week, but keeps trusting God.
By Leah Farr, Sentinel Correspondent, December 10, 2009
Last updated: Saturday, December 12, 2009 5:17 PM EST
Life has been an extreme test of faith for 32-year-old John Stouffer. The Enola man has spent more time in hospitals than at home since he was diagnosed with a rare, but fatal, vascular disease seven years ago.
Stouffer has Cogan’s Syndrome, a terminal illness that affects the vascular system, eyes, ears and other body systems over time. Doctors have been unable to determine how Stouffer contracted the disease.Since his diagnosis, he has battled infections, hearing loss, strokes, heart attacks, the removal of all of his teeth and a barrage of other health problems.On Wednesday, the 1996 Cedar Cliff High School graduate underwent surgery to amputate his leg below the knee as a result of complications from the disease. The night before his surgery, Stouffer said he was apprehensive, frustrated and facing a grim reality.But he also held onto his faith.The former rescue worker and EMT believes it is God and the goodness of local people that have kept him going through his darker times.Last year, Stouffer received nearly $1,000 in donations from Sentinel readers who heard his story and wanted to help alleviate the financial burden of paying for constant medical care.Those random acts of kindness mean the world to a man who has lost so many things.“There is so much going on in the world, going on with the economy,” Stouffer said between phone calls from doctors and well wishers. “The fact that people were taking the time for me when there are so many other organizations to give to ... the fact that people chose to help me with their time and money, it makes me want to fight a little harder.“There are times when I’m fighting this disease and there is no one else on the planet who get’s it. But then people step up. It’s incredibly motivating,” he says.While Stouffer has health insurance through Medicare and his former job with the state House of Representatives — he drove in motorcades for visiting politicians and worked for House Majority Policy Committee Chairman Roy Cornell and the House Republican Caucus — his copays and medical bills continue to rise astronomically every year.To help with the escalating costs, Stouffer also receives support from members of the Baughman Memorial United Methodist Church, who have created a “Caring for John Fund.”The church, where Stouffer attends when he is physically able, administers the fund to cover expenses for things like prescription drug costs and ambulance fees. Since its inception, more than $11,000 has been raised.But the need is still great. Stouffer recently acquired MSRA, a drug resistant bacterial infection, requiring him to have two IVs of antibiotics every day. That costs $517 a day.He will soon require intensive physical therapy and in-home help as he recovers from his recent amputation.With all the challenges he continues to face, Stouffer says he finds strength in the conversations he has with God and a handful of close friends who have stuck by him.Just recently, members from the New Cumberland firehouse, where Stouffer served as a rescue worker before he was diagnosed with Cogan’s Syndrome, brought him a shadow box with his jumpsuit and badges as a thanks to Stouffer for his service to the community.Throughout his disease Stouffer says he has learned not to take things for granted. Two years ago, doctors gave him only a year to live, but he has defied the odds and will continue to fight the battle against his fatal disease.Stouffer said his struggles have also helped him learn the importance of living by a higher moral code.“Take responsibility for your actions, treat people the way you want to be treated and stand by what is right. That is what I am going to do with this life I’ve been given.”
FYI
Checks to help Stouffer can be written to Baughman Memorial United Methodist Church with “Caring for John” in the memo line.
For more information or to make a contribution, contact the church at 774-2005 or visit www.cogans.org.

VRE - Vancomycin-Resistant Enterococcus

Vancomycin-resistant enterococcus (VRE) is the name given to a group of bacterial species of the genus Enterococcus that is resistant to the antibiotic vancomycin.[1] Enterococci are enteric and can be found in the digestive and urinary tracts of some humans. VRE was discovered in 1985[2] and is particularly dangerous to immunocompromised individuals. VRE species have an enhanced ability to pass resistant genes to other bacteria. While infection of healthy individuals is uncommon, it is possible that they could be colonized with newly-resistant bacteria.
There are six different types of vancomycin resistance shown by enterococcus : Van-A, Van-B, Van-C, Van-D, Van-E and Van-F. Of these, only Van-A, Van-B and Van-C have been seen in general clinical practice so far. The significance is that Van-A VRE is resistant to both vancomycin and teicoplanin, Van-B VRE is resistant to vancomycin but sensitive to teicoplanin, and Van-C is only partly resistant to vancomycin, and sensitive to teicoplanin. In the US, linezolid is commonly used to treat VRE, as teicoplanin is not available.
VRE can be carried by healthy people who have come into contact with the bacteria. The most likely place where such contact can occur is in a hospital (nosocomial infections), although it is thought that a significant percentage of intensively-farmed chicken also carries VRE.[3],[4]
In 2005, Lactobacillus rhamnosus GG (LGG), a strain of L. rhamnosus, was used successfully for the first time to treat gastrointestinal carriage of VRE in renal patients.[5]

Pseudomonas

History
Pseudomonad literally means 'false unit', being derived from the Greek pseudo (ψευδο 'false') and monas (μονάς / μονάδα 'a single unit'). The term "monad" was used in the early history of microbiology to denote single-celled organisms.
Because of their widespread occurrence in water and in plant seeds such as Dicots, the pseudomonads were observed early in the history of microbiology. The generic name Pseudomonas created for these organisms was defined in rather vague terms in 1894 as a genus of Gram-negative, rod-shaped and polar-flagella bacteria. Soon afterwards, Pseudomonads were isolated from many natural niches and a large number of species names was originally assigned to the genus. New methodology and the inclusion of approaches based on the studies of conservative macromolecules have reclassified many strains.
Pseudomonas aeruginosa is increasingly recognized as an emerging opportunistic pathogen of clinical relevance. Several different epidemiological studies indicate that antibiotic resistance is increasing in clinical isolates.
nucleator of ice crystals in clouds, thereby being of utmost importance to the formation of snow and rain around the world

Osteomyelitis? This is what I been fighting for the last several months, Weeks, and Days. Trying my hardest not lose anything by amputation surgry. Please pray or take a second about myself and my family. it gets frustrating around here. Each day it's a different illnes or I will be dead in next 36 to 72 hours.

Cogan's Syndrome

Cogan's syndrome = Syndrome of interstitial keratitis characterized by abrupt onset of vertigo, tinnitus, and usually rapid development of bilateral deafness.

News From Our Parish Nurse

Friday, January 23, 2009
News From Our Parish Nurse
Health Corner
Cogan's Syndrome
This syndrome is thought to be an autoimmune disorder characterized by inflammation of the cornea, hearing problems and dizziness that develop in children and young adults shortly after their recovery from what appeared to be an unremarkable respiratory infection. Patients may also experience red, painful eyes, sensitivity to light and blurred vision. Subsequent to the ocular symptoms, dizziness, ringing in the ears, hearing loss and balance and coordination may occur. The symptoms of Cogan’s syndrome may progress rapidly to bilateral deafness that may become permanent within two years. Complications of this disease may lead to cardiac and vascular problems that may be fatal in a small number of cases. Cogan’s frequently occurs after a flu like illness, though no definitive infectious agent has been identified. Several studies have shown an association with a previous clamydia infection. Many patients may have permanent visual or hearing damage; however, most patients are able to manage their symptoms and limit complications of the disease with appropriate treatment. However, in my case, it has affected every living organ and has been responsible for cardiac and respiratory arrest with ICU and Rehab visits totaling 16, thus far. I thank those of you who have contributed to the Caring for John fund through Baughman church.

Thanks to John Stouffer for submitting this informative article.

Peace, Love and Blessings,
Linda Olley, R.N.
Your Parish Nurse

Rex M. McCallum, MD

Rex M. McCallum, MD

Related Content
Services
Rheumatology and Immunology
Associate Medical Director, PDC

Department / Division:
Medicine / Rheumatology and Immunology

Address:
DUMC 2954
Durham, NC 27710

Appointment Telephone:
919-668-7630

Office Telephone:
919-684-8763

Fax Telephone:
919-684-6671

Training:

MD, Vanderbilt University School of Medicine (Tennessee), 1980

Residency:

Internal Medicine, Duke University Medical Center, 1980-1983
Rheumatology, Duke University Medical Center, 1983-1986


Clinical Interests:
Vasculitis, Cogan's syndrome, rheumatoid arthritis, connective tissue disease, inflammatory eye disease and systemic illnesses

Research Interests:
My main research interests remain Cogan's syndrome, inflammatory eye disease, and vasculitis. I maintain a clinical data base of the greater than 50 patients with Cogan's syndrome that have been evaluated by Dr. Barton F. Haynes and me since 1977. Cogan's syndrome is a syndrome of inflammatory eye disease associated with vestibuloauditory dysfunction that is Menierre's-like. The etiology of this unusual illness is felt to be inflammatory and autoimmune. In addition, I am one of two attendings in the Duke Uveitis Clinic with Dr. Glen Jaffe of ophthalmology. We maintain a clinical data base of all patients evaluated in the clinic. We perform clinical trials of medications and new approaches to treating inflammatory eye disese. We use an number of systemic medicines to treat inflammatory eye diseases and evaluate our results.

I am co-principal investigator for my colleague, Dr. E. William St. Clair, on his rheumatoid arthritis trials.


Key words: Cogan's syndrome, vasculitis, inflammatory eye disease, uveitis, rheumatoid arthritis

Representative Publications:
McCallum RM: Cogan's Syndrome. In Current Therapy in Allergy, Immunology and Rheumatology, 5th Edition, pp. 255- 260. Lichtenstein LM, Fauci AS (Editors), Mosby-Year Book, Philadelphia, PA, 1996. (1996)

McCallum RM, Haynes BF: Systemic Necrotizing Vasculitis. In Current Therapy in Allergy, Immunology and Rheumatology, 5th Edition, pp. 241-246. Lichtenstein LM, Fauci AS (Editors), Mosby-Year Book, Philadelphia, PA, 1996. (1996)

Fatal disease tests Enola man's faith

Religion
Enola
Fatal disease tests Enola man’s faith
By Tabitha Goodling, Sentinel Correspondent, December 12, 2008
Last updated: Thursday, December 11, 2008 5:18 PM EST
John Stouffer jokes that he is “still kickin’. ”The 30-year-old Enola man, known to friends and family as “Bundy,” was diagnosed five years ago with Cogan’s Syndrome, a terminal disease that affects the vascular system, eyes, ears and radiates throughout other systems of the body over time.While the disease has left the former rescue worker unable to work and stifled his dreams of pursuing a career in criminal justice, he keeps an open mind and a fear of God that helps him endure each day.“I just keep going,” Stouffer said recently during a phone interview.Part of what keeps him going is the support of Baughman Memorial United Methodist Church in New Cumberland, the church Stouffer grew up in. The church has seen Stouffer’s need — and his perseverance — and intends to help him in any way possible. The church started the “Caring for John” fund a few years ago.At least $10,000 has been raised for Stouffer’s medical expenses not covered by Social Security. Prescription drugs not covered by insurance and ambulance fees are covered by the fund.Checks are written to the Baughman Memorial United Methodist Church with “Caring for John” in the memo line. The church accumulates receipts for Stouffer’s expenses, and the treasurer holds vouchers for the administering of the fund.Current Pastor Brand Eaton has been ministering to Stouffer for the past two and a half years. He noted that while Stouffer undergoes the normal emotions of anyone with a chronic illness, such as anger, sadness, frustration and confusion, Stouffer always works it out and calls upon friends in the church and community to uplift him.“After he talks through some of his emotions, he can laugh again. John has a great sense of humor,” Eaton said. “He does his best to keep that going, but it gets difficult. His strength in this is knowing who to talk to, where to get help in his down times.”Stouffer resides with his sister, Kendra Jones, and her husband, Robert.Tough times have included the recent removal of his teeth and the loss of 80 percent of his hearing. He also endured lesions on his spleen, liver disease and has had eye surgery. Stouffer has spent many days and nights in local intensive care units, and experienced strokes and heart attacks. He has the functioning body of a man twice his age.“Everything in my body has been affected somehow at once,” Stouffer shared.While he admitted the prognosis is fatal, he is learning to live one day at a time to the best of his ability.Stouffer recognizes he is no stranger to critical circumstances and recalled his days as a rescue worker in which he was the first person called to a crime scene to see a friend and policeman dead.“I was always a God-fearing individual from experiencing the things in my work,” he noted.He holds a degree in criminal justice from Harrisburg Area Community College and Central Penn Business School, as well as SWAT team certifications.Before he was diagnosed with Cogan’s Syndrome, Stouffer drove in motorcades for visiting politicians and worked for House Majority Policy Committee Chairman Roy Cornell and the House Republican Caucus.The 1996 Cedar Cliff High School graduate was determined to live a life helping other people, and now other people are helping him.He admitted he is “grateful for anyone who gives,” and mentioned the church has blessed him by opening the fund and adding him to its prayer list.Eaton encourages people in the community to support Stouffer in any way they can — whether by means of donating funds or prayer and encouragement.“Send John a card. Let him know you care and that you are praying for him or that he is in your thoughts.” To make a contribution or for more information, contact the church office at 774-2005. or email govpodus @aol.com

"The Perfect Gift"

Health Corner“The Perfect Gift”By Kendra Jones
As the holidays arrive, many of us find that we have a mixture of feelings erupting. Some of us are excited and giddy. Some are caught up in the pursuit of perfection – the perfect cards to send out, the perfect meal, the perfect cookie recipe, the perfect gift, etc. etc. etc. Yet, there are others that just feel alone and do not look forward to all the hoopla. They wish it would never come at all. What all of us have in common is something that was given to us a very long time ago.
It doesn’t come in a neatly wrapped box. It comes to the single, pregnant teen mom, who has become accustomed to judgmental stares and comments. A simple, genuine smile flashed to her in a crowd warms the soul. It gives the mom-to-be strength. Her faith grows. She realizes that the life inside of her is good. Most importantly, she knows that she is not alone in her decision after all.
It comes to young parents when they are told that their small child will not see adulthood. Each day as they struggle to care for, provide for, and deal with knowledge of their child’s disease, something constantly whispers to them, “It’s going to be okay. Don’t give up.” It was always there for them, but it is present for everyone to see, when years later they are told that there is no trace of the disease. Their child is fine!
It comes when tired, weary and anxious souls sit alone and wait. It seems a miserable position to be in. The reasons are numerous – waiting for word, waiting to see someone or something, waiting for a chance, waiting to be remembered – regardless, they wait. There are no friends in this place. From somewhere in the loneliness and doubt a thought of something bright causes a smile to creep across the face. Suddenly, transportation to a warmer, gentler time is completed. Although, no one else is with them to see it, Someone is there rejoicing with them.
The perfect gift that can be given or received is not to be found in a brightly colored package. It may not even end up in a modern day manger. It is what our Heavenly Father gave to us a very long time ago. We don’t have to wait for one special day. We can use it everyday, all day long. Smile at a stranger. Share your faith. And don’t forget the better moments, no matter how small they may seem. Hope, Faith, Joy – God gave them to us through Christ – use them wisely!
A special Thank You to Kendra, My Sister for her inspiration and reminding us of “the reason for All seasons”. Also, A Special Thank You to Linda Olley, R.N.
Peace, Love and Blessings,Linda Olley, R.N. My Parish Nurse

Cogan's Day

A Resolution designating October 30, 2008, as "Cogan's Syndrome Awareness Day" in Pennsylvania.
188-0 Passed by the PA legislative body, and Governor.

David Glendenning Cogan

David Glendenning Cogan

American ophthalmologist, born 1908, Fall River, Massachusets; died 9th September, 1993, Bethesda.

Cogan's sign = Cogan's lid twitch, in patients with myasthenia. When the patient's eyes are directed downward for 10 to 20 seconds and the patient is then instructed to make a vertical saccade back to primary position, the upper eyelid elevates and either slowly begins to droop or else twitches several times before settling into a stable position
Cogan-Reese disease = A syndrome characterized by a matted or smudged appearance to the surface of the iris, unilateral glaucoma in the eyes with multiple peripheral anterior synechiae, multiple nodules of the iris, and ectopic Descemet's membrane.

Cogan's syndrome = Syndrome of interstitial keratitis characterized by abrupt onset of vertigo, tinnitus, and usually rapid development of bilateral deafness.

David Glendenning Cogan was born in Fall River, Massachusetts, where his father was an Episcopal minister. He was introduced to ophthalmology by his mother, herself a practitioner and a pioneering ophthalmologist. He attended local school until 1925, when he enrolled at Dartmouth College, where he combined a collegiate schedule with the first two years of medical school.
Cogan continued his studies at Harvard Medical School, graduating in 1932. He interned at the University of Chicago and underwent specialty training in ophthalmology as a resident at the Massachusetts Eye and Ear Infirmary in Boston. He then went abroad to obtain further experience in Switzerland, Germany and Holland as a Mosely travelling fellow.
Already in 1934 he succeeded his old mentor Frederick Verhoeff (1874-1968) as director of the Howe Laboratory of Ophthalmic Research, and he became Senior Surgeon at the Infirmary. During Cogan's 30-year stewardship the Howe Laboratory was to have a tremendous influence on ophthalmic research.
In the years between 1955 and his retirement Cogan was Henry Williams Professor of Ophthalmology at the eye clinic of the Harvard Medical School university hospital.
Following his mandatory retirement in 1973, aged 65 years, Cogan moved to the National Institutes of Health, where he continued his research activities. Despite his age, the tempo of his work continued unabated and he often put in 10-hour days and 6-day weeks.
David Cogan in a fruitful way has encouraged the cooperation between clinicians and scientists of basic research. He initiated and established the ophthalmological courses of basic science, now a part of specialty training at almost every medical faculty in the USA. He also introduced regular appointments for basic research scientists at the eye clinic of Harvard, thus facilitating the cooperation between scientist and clinician, setting an example to all major eye clinics in the USA. The fruitful research climate at his institution has resulted in several of the scientists at Howe Laboratory receiving more honorary awards than those of any other eye research laboratory.
Scientifically David Cogan has been very productive, working in many areas of ophthalmology. As a pathologist he was with the first group of American medical men going to Hiroshima to examine the effect of radiation following the atomic explosion. Through his studies of radiation cataracts he became one of the foremost in this area. He also contributed to the development of relationships between American and Japanese Ophthalmologists. He was one of the first ophthalmologists to visit Germany after the Second World War in an effort to "heal the wounds" and re-establish personal contacts between ophthalmologists in Germany and the USA. When, in his eighties, he was invited to be a lecturer of honour with the association of German ophthalmologists, and rendered his lecture in German.
It is in neuroophthalmology that David Cogan is internationally best known. Already in 1948 he published Neurology of the Ocular Muscles, a book later to go through several editions. The book contains a survey of various forms of nystagmus still worth reading.
David Cogan was an influential teacher, cherished by his countless student, of which several have become prominent. He believed the essence of investigation was originality, curiosity, and perseverance, and fostered that spirit in the talented clinicians and basic scientists he recruited to Howe. Despite his great workload Cogan found time for his family and friends. His home in the city or in the countryside at Lake Michigan were meeting places for scientists in ophthalmology.
During his long career Cogan has received many awards. Among them are the Warren Prize in 1944, Proctor's Award 1954, the Mackenzie medal in 1968, the Research to Prevent Blindness Award 1969 and the Gonin Medallion 1974. In 1985 he was honoured by the dedication of the David G. Cogan Library at the National Eye Institute. His name also lives on in the Cogan Ophthalmic History Society and the David Glendenning Cogan Professorship of Ophthalmology, Harvard Medical School.
During the years 1960 to 1966 he was editor-in-chief of Archives of Ophthalmology, and a member of the editorial staff of Graefe's Archive for Clinical and Experimental Ophthalmology since 1972.
"So great have been Dr. Cogan's achievements in all three areas – research, patient care and education – that he, more than anyone else, is credited with transforming the field of ophthalmology from a branch of surgery into a medical speciality at the forefront of science." Address at the dedication of the David G. Cogan Library at the National Eye Institute.
"To have such a seminal influence on your field is given to very few people ... how a man could by virtue of his mental agility, skills, and kindness catapult to the top remains an example and a lesson." Frederick A. Jakobiec, MD
"My connection with other entities to which you refer were similarly chance observations during a career, now coming to a close, in which I had an unusually favourable academic position. They were modest contributions that have reflected undue credit to me because of the eponymic designation. If, and when, their etiologic origins are clarified they should be classified by a more appropriate terminology." This letter, written in his own hand, illustrates Cogan's humble attitude to his own career.Cogan was a busy medical author, writing more than 500 articles and several books.
The Howe Laboratory of Ophthalmology at Harvard Medical School, the Massachusetts Eye and Ear Infirmary, and the National Eye Institute. 1990, 256 pages.
References:
Cogan DG: Myasthenia gravis: A review of the disease and a description of lid twitch as a characteristic sign. Arch Ophthalmol 74:217–221, 1965.
Cogan DG, Reese AB: A syndrome of iris nodules, ectopicDescemet's membrane, and unilateral glaucoma. Doc Ophthalmol 26:424, 1969.

Where To Donate?

Baughman UM Church
Caring for John
228 Bridge Street
New Cumberland, PA 17070
Checks should be made payable to Baughman UM Church with Caring for John in the Memo. All donations are tax-deductible.

A Litte About John and Cogan's

John Stouffer has been a tireless worker for former House Majority Policy Committee Chairman Roy Cornell and the House Republican Caucus, as well as with the local ambulance service and fire company. Bundy, as he is known by friends in Cedar Cliff High school, had incredible school spirit. He was at all the games encouraging the crowds to show their support. Now it is time for his friends to return the favor. For the last several months, John has been battling tough medical problems. He was diagnosed with Cogan's disease, which is a rare disease that affects his eyes, ears, and vascular system. There is little known about Cogan's disease and very few doctors have been able to provide him with relief. It is a constant fight. Blood clots, medicine interactions, constant pain, and loss of sensory skills. John has been putting up a good fight, but it has not been easy. The stress of being in and out of the hospital as well as mounting hospitable bills has taken its toll. At the young age of 30, he is dealing with a body that is acting more and more like a person of 65.
When asked how he's been handling everything, he said "it's been tough." "The thing I miss the most is being able to go out with my friends to a local bar, dance, and have a good time and helping others in the community."

Just through this year from Jan. I been in the I.C.U a least 2 times,plus i have been numerous procedures and suregeries. Plus the pain is getting worse.
Johnny" MAYOR GOV' Stouffer