The Skin I Live In: living with scleroderma
March 18, 2015
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It’s a warm day in the Monrovia forest as the cast and crew work on the set of Santa Monica College’s most recent short film project “Like A Rolling Stone.” The heat is encapsulated by the trees and makes it all the more challenging for the make-up department to keep the actors their foundation and wounds intact.
Among them is Maritza Andrade, a 28 year-old esthetician graduate who is currently studying to obtain an entrepreneurship certificate at SMC. “It is the transformation that excites me most,” she explains as she skillfully dabs patches of foundation on the actress’ skin. She takes a brief moment to assess the result and swiftly switches over to a new brush.
She starts applying clods of blood on the fake wounds and continues “I remember the first time that my mom took me to a drag show in West Hollywood. I must have been about eight years old and was amazed to see men transforming into women. It’s what started my curiosity in the art of transformations and inspired me to become a make-up artist.”
Seeing Andrade work so hard for days in a row and, in such an unpredictable environment, many would not be able to guess that she is diagnosed with scleroderma.
Scleroderma is a chronic autoimmune disease that is characterized by the thickening (sclera) of the skin (derma). According to the Scleroderma Foundation, there are approximately 300,000 cases of scleroderma estimated in the United States, 80% of which are female. It is an unfamiliar disease that typically strikes between the ages of 25 and 55 and is different for every patient. Misdiagnosis is therefore a common occurrence.
For Andrade, a roller coaster ride of unfortunate events started in the summer of 2010 when she worked at a cell phone company. Unlike her colleagues, she was having a hard time with the air conditioning that blasted full force to keep the space cool. “I was always very cold to the point that the tips of my fingers would become purple and my hands swollen.”
Andrade didn’t know it at the time but the phenomenon of hands and feet being abnormally sensitive to the cold is a common sign of the disease. It is referred to as the Raynaud Phenomenon and is 95% of the time a beginning symptom of those who have scleroderma.
As time went on, Andrade’s symptoms progressively worsened and she started reaching out for professional help. However, her medical visits were inconclusive. Her blood tests came out fine and the doctors told her that she was “perfectly healthy,” often making Andrade feel as though she was lying.
She was in so much pain that she requested disability leave. Her employers didn’t believe that she was debilitated and terminated her. Andrade explains that this was unlawful and in response sought the help of an attorney and opened up a case against the cell phone company. She was sent to different doctors to figure out what was wrong with her and prove that she did have a disability.
For two long years, doctors would tell her that she most likely suffered from arthritis. However, Andrade had done her own research online and knew that the symptoms did not match. She kept on reaching out to new doctors in the hope to find answers and resolve the mystery around her suffering.
Meanwhile, the symptoms worsened. Andrade would be in constant pain, dealt with swellings, and was tired non-stop. “Any step or move would make me feel out of breath. I couldn’t keep up with other people anymore, my relationship ended and people accused me of exaggerating. This was not the case,” she reminisces.
In 2012, Andrade finally found the answers she had been looking for. She was referred to a doctor who immediately recognized her symptoms and performed a test during which he stuck long needles in her arms and legs. She couldn’t feel the needles and the doctor explained that this was the case because of the thickening of her skin. He diagnosed her with scleroderma.
Relieved to finally have found proof and answers but scared of her diagnosis, Andrade started doing a great deal of research. “I had never heard of scleroderma before and didn’t like what I saw online. I was scared by the images of doll-like fingers, stretched out faces and the posts that spoke about those that died from it.”
A cure for the disease does not exist yet, but treatments for Andrade’s specific symptoms are available. However, she did not have insurance and as a result became her own doctor. She started searching for more information on the Internet and quickly found out that the disease affects everyone differently. “Some people are affected only on the outside, some just on the inside and others in both ways,” says Andrade when explaining how for some patients, the disease can mean the hardening of the tissue of internal organs.
Andrade started researching the benefits of specific foods, avoiding toxins, and cutting out any type of inflammatory food. Slowly but surely her energy level and joints started feeling better. She decided to go back to school and enrolled in Elegance International, a make-up school in Hollywood.
When it comes to her personal life Andrade shares that she consciously tries not to involve her friends and family too much. She shares that they felt just as clueless about the disease as she did when she first found out. “This journey is difficult enough as is and I don’t want to drag others into it. I don’t want to worry them so I prefer to fall alone and pick myself up,” she explains.
This year was the first time that she and her parents went to a meeting of a scleroderma support group. She explains that she had never attended one before because it is concerning to see people with scleroderma at later stages. Some of the attendants have had scleroderma for over 20 years and Andrade explains that their drastically changed appearances and disabilities are a foresight to what she might look like in a few years. This frightens her tremendously.
She prefers to stay as busy as possible and surround herself with healthy and positive people. She feels very fortunate to have a girlfriend that supports her through thick and thin. She completed her studies at Elegance International in 2012, started studying Cosmetology at SMC and got her certificate in 2014. She currently pursues an entrepreneurship certificate to be able to start her own business.
As Andrade faces an uncertain metamorphosis of herself, she is now working to mold and transform the appearance of others. On the side, Andrade freelances on film projects and additionally works for a cosmetic line that she sells products for. She explains that this job is perfect for her; “I occasionally have bad days in which I have to stay in bed and working on a freelance basis allows me to set my own schedule. I feel fortunate to be able to help resolve others their skin issues as I am dealing with my own.”
Andrade plans on starting treatment as soon as her insurance is approved, a process she is working on right now. Her grip is not what is used to be, she cannot hold onto things, has a difficult time sucking from a straw, cannot reach her back, do her own hair, and is incapable of bending over. “People have to tie my shoes for me and I sometimes feel like an old lady. That being said, I still can do a lot of things that I feel passionate about,” Andrade emphasizes while discussing the limitations she faces yet overcomes with a determined will.
Andrade now lives her life aware that she is not alone in her struggle. “Scleroderma triggers people differently. It’s a deadly disease – it has and still is killing people. I really hope that more research will be done and provide answers and solutions to those who struggle with it.”
Yet amid the pain and uncertainty, Andrade forges ahead. “Of course I wish I was healthy again like I used to be and live an active lifestyle, but I work with what I’ve got and try to manage my limitations in the best way possible. My dream and life goal? To live!”