Global Observances and Outreach Bring Attention to Complex, Debilitating
TOURNAI, June 24, 2013 /CNW Telbec/ - TOURNAI, Belgium, HAMILTON, Ontario, and DANVERS, Mass., June 24, 2013 /CNW/ - An international consortium of patient advocacy groups dealing
with the autoimmune disease scleroderma, also called systemic
sclerosis, will mark World Scleroderma Day on Saturday, June 29. Events and observances around the world will be held and are designed to
foster greater awareness and understanding of this little-known
disease. Scleroderma, which can strike women, men and children, is a
complex, debilitating – and sometimes fatal – degeneration of the
body's organ and vascular systems.
The Federation of European Scleroderma Associations (FESCA), consisting
of 23 independent, national European organizations, The Scleroderma
Society of Canada, and the Scleroderma Foundation in the United States, are working cooperatively to raise awareness about scleroderma. The
groups encourage the international scleroderma community to reach out
to media, government officials, and the medical community on and around
World Scleroderma Day.
June has been observed as "Scleroderma Awareness Month" since the 1980s
in the U.S. and several Canadian provinces, with proclamations issued
from national, state and provincial governments. The first World
Scleroderma Day was inaugurated in Europe on June 29, 2009. In February 2010, the first Systemic Sclerosis World Congress was held in Florence, Italy, where it was officially decided that June 29 would be recognized as World Scleroderma Day. Within the past three
years, the day has grown to include observances in Australia, Brazil, Canada, Europe, India, the U.S., and many more countries.
About Scleroderma (Systemic Sclerosis)
Scleroderma, or systemic sclerosis, is a chronic systemic autoimmune
disease characterized by the over-production of collagen, creating
fibrosis of the skin and internal organ systems. The word "scleroderma"
comes from two Greek words, "sclero" meaning hard, and "derma" meaning
skin. Hardening of the skin is one of the most visible manifestations
of the disease.
There are two major classifications of scleroderma: localized
scleroderma and systemic sclerosis. Other forms or sub-classifications,
each with its own characteristics and prognosis, may be identified
through future research.
Scleroderma symptoms vary greatly for each person, and the effects of
the disease can range from mild to life-threatening, depending on which
parts of the body are affected and the extent to which they are
affected. Prompt and proper diagnosis and treatment by qualified
physicians may minimize the symptoms of scleroderma and lessen the
chance for permanent damage.
As in most autoimmune diseases, women are disproportionately affected by
scleroderma. Overall, female patients outnumber male patients by
approximately 4-to-1. Scleroderma can develop in every age group from
infants to the elderly, but its onset is most frequent between the ages
of 25 to 55.
Beyond gender, other factors, such as race and ethnic background, may
influence the risk of developing scleroderma, the age of onset, and the
pattern or severity of internal organ involvement. The reasons for this
are not clear. Although scleroderma is not directly inherited, some
scientists feel there is a slight predisposition to it in families with
a history of rheumatic disease.
Currently, there is no cure for scleroderma, but there are many
treatments available to help particular symptoms. Because scleroderma
can affect numerous organ systems, there is considerable variation in
the treatments based on an individual's particular disease
Why World Scleroderma Day is Important
Like many individuals who face life with the complications associated
with a little-known or rare disease, those living with scleroderma
often feel isolated, alone, and misunderstood as their life and
physical abilities change due to the effects of the disease. Beyond the
social and emotional impacts of scleroderma, knowledge of the disease
among the medical community often is lacking. This leads to inaccurate
diagnosis, and a prolonged period before an accurate diagnosis is made,
thus resulting in a lack of proper medical intervention during early
onset of disease. World Scleroderma Day was created to empower patients
and generate greater understanding and recognition of the disease.
"Awareness is at the core of our mission," said Ann Tyrrell Kennedy, the president of FESCA who resides in France. "By joining together on a global level, the collective voice of the
scleroderma community can be heard more loudly and frequently, which
can lead to greater interest in this disease."
Other scleroderma organization leaders agree. Robert J. Riggs, Chief
Executive Officer of the U.S.-based Scleroderma Foundation commented,
"In the United States, approximately 300,000 people have scleroderma, but recent studies
indicate that the overall annual direct and indirect costs of the
disease in the U.S. are $1.5 billion, with a direct cost of treatment for patients reaching $460 million annually. Yet, in the U.S., the federal investment in scleroderma
research reaches only about $20 million each year. When you look at those numbers," Riggs said, "one realizes
that scleroderma is not only a devastating disease, but also one that
carries a significant economic impact. Clearly more needs to be done to
find the cause, better treatments and hopefully a cure."
"World Scleroderma Day brings focus on this disease at a critical time
in global research initiatives," said Maureen Sauve, president of the Scleroderma Society of Canada. "It's exciting to see researchers working in this field fostering
greater collaborations across institutions and international borders to
advance science in search of treatments and a cure." All three leaders
agree that momentum for scleroderma research has increased over the
past seven to 10 years, including more significant findings than there
have been in previous decades. "Like most diseases, scleroderma is a
global problem, and solutions will come when we work as a global
community, which is the goal of World Scleroderma Day," commented Tyrrell Kennedy.
Upcoming Research and Education Events
Numerous national and international meetings are forthcoming in the
months ahead that generate scleroderma awareness and education. Key
meetings and congresses include:
July 26 – 28, 2013, Atlanta, GA., USA: 15th Annual Scleroderma Foundation Patient Education Conference, www.scleroderma.org
July 27, 2013, Atlanta, GA., USA: Scleroderma Foundation Continuing Medical Education/Continuing Nurse
Education Sessions, "The Lung in Scleroderma," www.scleroderma.org
August 3 – 7, 2013, Boston, Mass., USA: 13th International Workshop on Scleroderma Research, www.bumc.bu.edu/sclerodermaworkshop
September 27 – 28, 2013, Hamilton, Ontario, Canada: 2013 Scleroderma Canada Congress, www.sclerodermacongress.ca
February 6 – 8, 2014, Rome, Italy: 3rd Systemic Sclerosis World Congress, www.fesca-scleroderma.eu/upcoming-events/3rd-systemic-sclerosis-world-congress-2014
For More Information
To learn more about scleroderma and events surrounding World Scleroderma
Day, please visit the following:
In the European Union:
Federation of European Scleroderma Associations (FESCA)
Scleroderma Society of Canada
In the United States:
Scleroderma Foundation, Inc.
European Union: Ann Tyrrell Kennedy: firstname.lastname@example.org
Canada: Maureen Sauve: email@example.com
United States: Christina Relacion: firstname.lastname@example.org
SOURCE: Scleroderma Foundation
For further information: