Hello to all my friends...well this is the latest diagnosis for me....the results of all the tests showed Sclerderma ! below is the explanation. Now in order to be sure there that all is well I have to have a Broncospity (sp) done but, I have a very bad cold and have to wail till that clears up also have to get an ok from the Cardiologist to have the test done, this is all so complicated !
I can sure relate to the following article, not sure why this happened it all happened so fast but apparantly the big guy in the sky has a reason for me.
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June is National Scleroderma Awareness Monthby Cindy Abole Public Relations Imagine the difficulty of assembling a 500-piece jigsaw puzzle with only a handful of pieces. Or the challenge of playing a song composition on the piano from sheet music that has only a few notes.
These fractured feelings of incompleteness, frustration and uncertainty can also be shared by a person living with scleroderma.
For more than two centuries, the earliest cases of scleroderma defied both an explanation and cure. Even today, it is still misunderstood as much as its symptoms wax and wane among its 300,000 sufferers within the United States. Once thought of as a rare condition, scleroderma is diagnosed in more people today than muscular dystrophy, multiple sclerosis or cystic fibrosis.
But through the combined efforts of a local support group, its energetic, young president and a specialized team of MUSC scientists and experts, these impassioned advocates hope to change the public’s perception about scleroderma forever.
“There have already been many significant advances with scleroderma,” said Richard Silver, professor and director, Division of Rheumatology and Immunology. “The ability to provide early diagnosis for the disease has improved the public’s perception of scleroderma sufferers within these past 20 years.”
Scleroderma is a chronic autoimmune disease affecting the body’s connective tissue. Physically, it’s a build-up of scar tissue that affects a person’s skin and internal organs. The disease is characterized by discolored patchy skin, swelling, joint and muscle pain, shortness of breath, swallowing difficulties and a host of other problems. Its cause and cure are still unknown.
The Palmetto Chapter of the Scleroderma Foundation began as a support group for patients, their families and caregivers, plus other newly diagnosed individuals. Today, it continues to function as a safe haven for members to relate, communicate and share research news, increase public awareness and champion fund-raising efforts for research and other outreach.
“For me, finding out that my mother and family were not alone in fighting this disease was such a burden lifted off my shoulders,” said Rosemary Brezden, president of the Palmetto Chapter of the Scleroderma Foundation. “I hope that this chapter gives that gift to others.”
The disease is so highly individualized that it can affect one person differently from another. Research shows that scleroderma can follow one of two paths. It can progress to become an acute, life-threatening condition or it can follow an extremely slow course.
As the disease progresses, patients usually suffer from a multitude of systemic conditions which affect the lungs, heart, kidney and digestive system. Like many chronic autoimmune diseases, scleroderma affects women more than men, especially African American women. Of the major complications associated with the disease, pulmonary fibrosis and malignant hypertension are leading causes of death among most scleroderma victims.
For physicians, their challenge continues to focus on early identification and diagnosis of symptoms that are usually non-specific. Today, progressive advances in research and better experience with the disease have allowed specialists to apply a team-based approach brand to care—enlisting services of other medical specialists, including dermatologists, rheuma-tologists or pulmonologists—as the disease progresses within patients.
“There’s much research work going on with this disease in the Division of Rheumatology and Immunology,” Silver said. “We’re hoping that some of the breakthroughs we’ve already made for arthritis will spill over for scleroderma, as well.”
MUSC has built a sturdy foothold for scleroderma research within the past 30 years. MUSC ranks comparably with Boston, Philadelphia, Baltimore and Los Angeles as a specialty scleroderma research and treatment center.
Brezden, whose mother, Jean, was diagnosed with Scleroderma almost 30 years ago, has been her mother’s advocate and caregiver. Brezden remembers attending a scleroderma chapter meeting in Georgetown with her mother only a few years ago.
“I remember my mother being very hesitant to attend,” Brezden said. “The thought of meeting others with the same chronic disease in different stages made her more fearful.”
For localized scleroderma, the prognosis for a normal life is very positive. In a study for the disease, reports favor a 10-year survival rate after diagnosis measuring about 85 percent.
The group had reached its own pivotal point in activity and was considering disbanding because of weak participation and leadership. It wasn’t long until Brezden took the reigns as chapter president and sought plans to move the Palmetto Chapter back to Charleston to accommodate the high concentration of members living in West Ashley, Summerville and Goose Creek.
“I immediately fell in love with these people,” said Brezden, describing her initial reaction of seeing a wide example of the disease manifested within others. “Seeing their comfortable interaction with everyone helped me to realize their basic need for total acceptance and affirmation amongst themselves. From that point on, I was convinced that this is where mom and I needed to be.”
Brezden has led the charge as a busy advocate for scleroderma around the Lowcountry and throughout the state. She’s rekindled the interests and participation of its 40 members by setting goals to promote better education and other awareness issues. The group also maintains an Internet website, which features a quarterly newsletter and other resources to communicate news to members and people seeking information.
The group has staffed an information booth at the Coastal Carolina Fair since 1998. Through June’s celebration of National Scleroderma Awareness month, the group has contracted an outdoor billboard campaign around the Tri-county area to reinforce its message and presence.
“People need to realize that MUSC is on the cutting edge of key research and treatment with this disease,” Brezden said. “I wish there was a way to help raise research dollars and share one pot in a circular funding effort.”
Last year, the chapter sponsored a workshop featuring MUSC chief rheumatologist Silver, who shared the latest research news and answered questions following his participation at a national scleroderma conference in San Diego.
“All of us are very hopeful people,” Brezden said. “Even if Dr. Silver and other specialists find one small thing today, we look at it as something big. You never know, it could be a key to finding a cure for scleroderma tomorrow.”
MUSC fertile ground for researchby Cindy Abole Public Relations The Lowcountry research arena for scleroderma has grown from fertile ground starting with former rheumatology chair and physician E. Carwile LeRoy’s discovery linking the disease and collagen overproduction. Division of Rheumatology and Immunology Chair Richard Silver, M.D., has enlisted the field’s best researchers to study this disease. Included on Silver’s team are molecular biologist Maria Trojanowska, Ph.D., and Gary Gilkeson, M.D., a rheumatologist who specializes in lupus research.
Trojanowska and her team have focused on various aspects of collagen research begun by LeRoy. She cites many reasons why progress in this area of research has been at a crawl. The problem has only recently been attributed to the molecular level, she said.
“Today, there are better tools available, and with the explosion of new information from the Human Genome Project, it’s now only a matter of who’s going to get there first,” Trojanowska said. Her study of human fibroblasts from scleroderma patients has yielded good results. Fibroblasts are the cells in the human skin responsible for producing collagen.
“Just having a better understanding of how collagen is produced will enable scientists to design better drugs to block its excessive formation in scleroderma patients,” Silver said.
Research teams like Dr. Marie Trojanowska of MUSC's Division Rheumatology and Immunology have progressed in reearch related to scleroderma. Bottom row from left: Jodi Gore, Trojanowska, Asia Czuwara-Ladykowska. Top row from left: Gosia Markiewicz, Madoka Sato and Daniel Shegogue.
Trojanowska is studying how fibroblasts regulate the connective tissue also found in the production of most internal organs. She suspects the problem may lie on a molecular level, which involves a miscommunication or signaling problem in the production and secretion of collagen.
“Too much collagen production can disrupt the delicate architecture of any internal organ,” Trojanowska said. “Overproduction yields to poor organ function.”
Gilkeson and his crew of 13 researchers are hoping to discover something linking genetic and environmental interactions with lupus and scleroderma, two autoimmune diseases akin to one another. Both diseases disproportionately affect African American women of child-bearing age.
“We’re working with both lab and clinical research to develop new therapies that will help us understand the cause and treatment of lupus that are not as toxic or non-specific,” Gilkeson said.
“We’re hoping that through new industry-sponsored drug treatment programs, independent studies that follow lupus patients and basic bench side research, we’ll be successful in tackling new knowledge of both diseases.”
Gilkeson is collaborating with Silver, Barbara Tilley, Ph.D., who chairs the Department of Biometry and Epidemiology and Marc Silverstein, M.D., director of MUSC’s Center for Health Care Research, to establish plans for a Lupus and Scleroderma Research Center at MUSC.
In 1998, scleroderma research received a generous financial boost when the Division of Rheumatology and Immunology received more than $1 million to help fund scleroderma research efforts at MUSC. The donation was made through the estate of Reeva E. Donoghue, whose daughter suffered from scleroderma, and was treated at MUSC in 1983 and 1985.
“The local Palmetto Chapter of the Scleroderma Foundation continues to do a terrific job in terms of fund-raising and public awareness,” Silver said. “Helping members and other individuals obtain information through the Internet and other resources has been extremely helpful in guiding them to understand this disease.”
Caring mother remembered for smile, courageJocelyn Washington dreamed of becoming a nurse to serve and care for others. She made it, becoming a loving daughter and mother of her two children, Lauren, 3 and Terrence, 10.
Edith Edwards, with grandchildren, Lauren, 3 and Terrence, 10, remember Jocelyn Washington who died of scleroderma last July.
During the day, she extended that same caring attitude and trademark smile to countless faces where she worked delivering food trays to patients at MUSC Medical Center.
For four years, she lived and struggled with scleroderma until her untimely death last July.
“Jocelyn was a real blessing in my life,” said Edith Edwards of her 33-year old daughter. “She was a devoted mother, daughter and my best friend. I didn't know that I'd lose her so soon.”
Washington was diagnosed with the disease in 1996. At the time, she was also pregnant, and carrying her second child. She had never heard of scleroderma.
Washington led a busy life. During the day, she was a patient services employee with MUSC's Dietetic Services. Her job was physically demanding transporting 400-pound food carts throughout the hospital. She delivered meal trays—her most favorite part of the job since she enjoyed interacting with patients. According to family and friends, Washington was always a person who enjoyed meeting people.
Following her diagnosis, a family friend had suggested that they learn more about the disease through the Palmetto Chapter of the Scleroderma Foundation. To Washington's surprise, she was one of two local African American women in the group diagnosed with the disease.
“I think just being around others and seeing changes with people really helped Jocelyn accept and deal with the disease,” said Edwards, who herself suffers from severe rheumatoid arthritis. “Just knowing its changes and severity allowed her to open up and talk more about it.”
These changes that Edwards referred to were the tell-tale skin splotches and discoloration throughout the body, difficulty breathing, joint pain and swelling and taut skin that would often crack, bleed and blister —all symptoms of the disease manifesting itself through its victims.
Eventually, the disease took its toll, draining Washington of energy and spirit. Last November, she was forced to quit work because she became too weak and tired to continue. Even dedicated co-workers tried to lend a hand as she struggled to perform her job. Six months later, it was the disease that won out in the end.
“Losing Jocelyn was one of our group's low points,” said Rosemary Brezden, an MUSC pharmacist and president of the Palmetto Chapter of the Scleroderma Foundation. “The loss was very tragic to everyone. When we lose someone, somehow the group seems to realize that it could be me.”
Today, Edwards continues to speak highly of the group and the physicians who cared for her daughter. When she can, she attends meetings and is an active advocate for the group's role in the community and the disease.
“The chapter is like family,” Edwards said. “They let me know early on that they felt my pain and that my loss was their loss, too. In the months after Joyce's death, they also learned how to cheer me. They did the same with Joyce as she battled with the disease.”
When asked if physicians and researchers were making a difference in honing in on a cure for scleroderma, her reaction was at least hopeful.
“I feel sure that a cure for the disease will be found,” Edwards responded. “Judging by the care given to my daughter by physicians and staff, I'm hoping a discovery will be made at least during my granddaughter's lifetime.”
Until we meet again my friends remember:
Inhale ~~~ 123