In a blog post entitled “A Death
Sentence Known as Scleroderma,” a mom of a girl named Kelly speaks of Kelly’s
daily struggle with the disease, Scleroderma. She says, “It is especially hard
when you have no idea if your daughter will last a month, a year or ten years.
And for all of the mothers out there whose children are just being diagnosed, I
want them to have a better fighting chance than I believe my daughter received.
And I don’t want them to ever hear the words ‘We don’t know what causes it, and
don’t know how to cure it, so just sit back and wait to die.’ To child of 17,
that is nothing more than a death sentence that never gets out of their head.”
(P. Mooney, page 1) Scleroderma is an autoimmune disorder made up of a group of
diseases that affect connective tissue and organs within the body; there are
several types of scleroderma, there is no cure and research remains critically
unfunded.
The word
scleroderma is derived from the Greek words “skleros” which means hard or indurate.
It is also derived from the Greek word “derma” which means skin. Hippocrates
first described the “scleroderma condition” as “thickened skin.” In 1752, the
first detailed description of scleroderma was given as “wood like or containing
a dry hide.” In 1836, the term scleroderma was applied to patient’s condition
for the very first time. The patient had dark leather like skin and exhibited a
loss of range in joint motion due to the skin tightening. (S. Jimenez, page 1)
Even though doctors
and scientists do know that it affects the skin and organs, the cause is
universally unknown. There are also a few things that the disease is not. Scleroderma is not cancerous. It is
now contagious. It is not infectious. It is not malignant. (Scleroderma
Foundation, page 1) However, the cause is completely unknown. Though the cause
is primarily unknown, it is known that it begins by one’s body producing too
much collagen in the skin and other organs. (U.S. National Library of Medicine,
page 1) There are two main types of Scleroderma, localized and systemic.
Localized type often only affects the skin and does not generally harm the
major organs of one’s body. The systemic type affects the skin, blood vessels,
and the major organs. Most localized types show up before one reaches age 40
and is the least common in African Americans. Systemic type is more common in
ages 30-50 and is generally more serious than the localized type. (National
Institute of Arthritis and Musculoskeletal and Skin Diseases, page 2)
Though the
cause is unknown, the effects and symptoms are certainly alive and visible. The
disease affects mainly the skin, kidneys, heart, digestion, lungs, teeth,
movement, and speech. From those, however, other problems could stem. Skin
problems could include dry and stiff skin, fingers or toes turning blue or
white, hair loss, and skin hardening or tightening. (U.S. National Library of
Medicine, page 1) Dry mouth and dental problems include tight skin on your
face, trouble caring for teeth, and harm to tissues in the mouth can loosen
teeth. “Gastrointestinal problems can include heartburn, trouble swallowing,
feeling full as soon as you start eating, and diarrhea, constipation, and gas.”
(National Institute of Arthritis and Musculoskeletal and Skin Diseases, page 5)
Problems from lung damage could include loss of lung function, lung disease,
scarring of lung tissue, and high blood pressure. Heart problems include
scarring and weakness, swelling of the heart muscle, and a heartbeat that isn’t
normal. Kidney failure can also result from Scleroderma. Most people with
Scleroderma have skin changes in how their skin looks which can affect their self-image.
(National Institute of Arthritis and Musculoskeletal and Skin Diseases, page 6)
Because of
all of the effects of Scleroderma, your life can be rather changed by this
awful disease. Everyday activities can sometimes be brought to a halt due to
fatigue or other physical limitations brought on by the disease. I know this
first hand from the toll it has played on my Aunt Lisa throughout the last five
to ten years. She was diagnosed at the age of 18 and has had spells over the
years but it is just now really affecting her life. For example, everyday as
soon as she gets home from work, she goes straight home to sleep because her
body literally cannot take anymore. In most people, problems with digestion may
require changes in diet and they may have to eat several small meals rather
than a few larger meals. Moisturizer applied to the skin is also very
imperative to deal with dry and stiff skin. Patients stay very cold and in
order to stay warm, it is good to dress in layers, wear socks, boots and
gloves. More important than coping with physical ailments, patients must learn
how to deal with the physiological and emotional toll it takes on the body.
Just like any other chronic, fatal disease, coping with the fact that there is
virtually no cure is literally distressing on the body and mind, to know that
you could literally just harden up and die. (America College of Rheumatology
Communications, page 2)
Currently, scleroderma
research remains critically unfunded by the National Institute of Health.
However, the Scleroderma Research Foundation is doing all that it can to
provide research and funds to support the fight against Scleroderma and the
race to a cure. “Until new therapies are made possible by advances in medical
research, people living with scleroderma continue to have hope, knowing that
scientists are working every day on their behalf.” (Scleroderma Research
Foundation, page 1)
To me, this awful disease is worse
than cancer because it can potentially affect the entire body, not just a
certain area. There is no cure and patients living with it have to find other
ways to cope with the disease. It is my prayer that scientists can find
something to give people like my Aunt Lisa hope that one day this fatal,
chronic disease can at least be brought to a halt to prolong life and make
better the quality of life, despite Scleroderma.
