You wake up in the morning and your body feels heavy and fatigued as if you’ve just run a marathon, and your joints feel like their burning, but all you’ve done is sit up on the bed. You find it hard to breathe and there is a painful, swollen sensation in your feet and hands that makes you feel as if they were about to burst and when you touch your face it feels stiff and unnatural. When you stand up off the bed and try to make it to the bathroom, within seconds you need to sit down again, the only way you can get around is by wheelchair. Today’s a school day so you have to be efficient, put on your shoes which are a size too big because your feet get too swollen, brush your hair into a ponytail to try and hide thinnest areas, and get to class and listen as carefully as you can because your hands are so stiff and swollen you can’t manage writing notes (Senï¿½cal, 1990), (Seibold, 1999), (Blau and Dodi, 1984).
This is what a day in Ashley Looper’s life is like, a teenage girl who was diagnosed with several forms of autoimmune disorders, including mixed connective tissue disease, lupus erythematosus, juvenile arthritis and scleroderma. Autoimmune responses occur when the body is not able to recognize it’s own cells, which prompts the body to reject it’s cells by producing antibodies for the unrecognizable cells.
Generally, the body has the ability to suppress lymphocytes (white blood cells that should be protecting the body) that have the potential to create autoimmune reactions, but this balance of control can be disturbed by various factors. It is unknown how precisely the balance is disrupted, but there is evidence that various drugs, viruses, toxins and even hormones are a factor in initiating the response in an individual who has a genetic background with this disorder and affects women primarily (National Women’s Health Information Center, 2000).
Ashley is currently showing the early signs of scleroderma, a connective tissue disease that affects as many people as relatively well known diseases such as multiple sclerosis and cystic fibrosis, but unfortunately this disease has never received as much publicity and still remains in obscurity to this day. The term scleroderma is taken from the Greek words sueras and derma which are defined as ‘hard’ and ‘skin’. Diseases such as scleroderma are incredibly disfiguring, have the potential to be fatal and can prevent a person diagnosed from leading the full life they otherwise might have led (Simon, 2002).
In this disorder when the body has an autoimmune reaction, it overproduces the connective tissue (collagen) in the skin. There are 2 main categories of scleroderma, systematic or localized, systematic being the steady spread of the disease throughout the body and localized having the disease being centralized within specific areas. The altercations of systematic scleroderma are by far the most life threatening due to the complications it causes because of the extensive area skin covers throughout the body. Along with the superficial tightening of the skin, if the organs in the body are affected situations such as difficulty eating and breathing are caused because of scarring in these vital organs (Simon, 2002). For instance, when scleroderma affects the lungs it causes scarring in the alveoli.
These microscopic compartments in the lungs are the critical element to absorbing oxygen and releasing carbon dioxide in the body, so when scarring occurs it is incredibly difficult to breathe (Silver, 2004). Another example is when the esophagus is affected by scleroderma and the scarring prevents the muscles that close the stomach from functioning properly, which leads to damage in the esophagus by the stomach’s hydrochloric acid. Eventually this will burn cause incredible pain while ingesting food (Simon, 2002). Scleroderma is a tragic and life- altering disease and will eventually leave permanent scars on the patient.
Until recently, the only method of dealing with scleroderma and other autoimmune disorders was simply prescribing painkillers and various other drugs to help make the symptoms more bearable. However, at great cost, new research into immunology has led to some revolutionary treatments such as photopheresis, a 3-5 hour procedure that treats the white blood cells to ultraviolet A (UVA) and the drug 8-methoxsalen which creates the effect of a vaccine for the rouge lymphocytes. It was developed at Yale University and it was found that 68 % of the patients treated showed improvement with few side effects (Therakos, 2004).
As you may have already noticed, plastic surgery is now a common accepted practice in a world obsessed with physical ‘beauty’, to defy time and nature; the world will stop at nothing in the endless pursuit of perfection. That is what has promoted the dangerous obsession with cosmetic surgery in the 21st century. What many people may not know about cosmetic surgery is the close relationship it has with autoimmune reactions, numerous studies done have connected breast implants and bovine collagen implants to various forms of connective tissue diseases (Hochberg, 1993). Now we must consider the logic and irony of this absurd riddle. If an individual were to pay for silicon implants in order to be beautiful, but it results in an autoimmune reaction, which then scars this individual for life, although the individual pays for costly medical procedures to put the disease into remission, who is to gain from this charade?
We must reevaluate ourselves and our society today, this disease presents an excellent universal moral that should apply to everyone. Our society has become shallow in it’s demands of beauty and we must realize that physical beauty is only skin deep and the endurance and strength of the sufferers of such autoimmune diseases as scleroderma are proof of such. Take this example of Ashley, and consider all that this disease has taken away from her. Now think of that perfectly healthy individual who is merely unsatisfied with their appearance.
How much do you believe someone like Ashley would be willing to sacrifice to return to before she had these diseases? She struggles to look relatively normal on the outside, but you can never know what they might really be suffering, we can not feel the pain that they endure just by living day to day, just as we can not judge someone on their appearances, because appearances won’t last, when beauty abandons someone, their stubborn will, their intelligence, their passions as a human is what’s left and that is what society should sincerely be looking at, and it’s very likely that you may know your own ‘Ashley’.
Blau, Sheldon and Dodi Schultz. Lupus: The Body Against Itself. 2nd ed. Garden City: Doubleday ; Company, 1984.
Hochberg, Marc C. “The Cleopatra Syndrome Revisited.” Annals of Internal Medicine Online. 118.12 (June 1993) 981-983. 15 December 2004. ;http://www.annals.org/cgi/content/full/118/12/981#R1-13;.
Looper, Ashley. “The Pretty Disease.” Seventeen. May 2002. 98-101.
National Women’s Health Information Center. 23 October 2000. U.S. Department of Health and Human Services. (15 December 2004).
Seibold, James R. “Research Challenges of Childhood Scleroderma.” Juvenile Scleroderma Network. 1999. (14 Dec. 2004) <http://www.jsdn.org/archmedart/researchchallenges.htm>.
Senï¿½cal, Jean-Luc. “What is Lupus?” Lupus: The Disease with 1000 Faces. Montreal, 1990.
(14 December 2004). <http://www.lupuscanada.org/en/book.html>.
Silver, Richard. “Lung Fibrosis in Systemic Sclerosis.” Scleroderma Voice, no. 1 (2004)
Simon, Harvey, et al, eds. “Diagnosis and Treatment Strategy for Underlying Mechanisms of Scleroderma.” Scleroderma 88, no. 1 (June 2002): 1-13.
Therakos.2004. Johnson & Johnson Company. 15 December 2004. <http://www.therakos.com/home.jhtml?page=BrowseContent.jhtml&content=/thrk/therakos/about/about_us_eng.jhtml&bcm=-None-0600a68480015a77>.