Project Scleroderma | Stories
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Lisa’s Story

By: Christy McCaffrey

November 11, 2015

“I am Lisa Wilson – Paramedic, girlfriend, daughter, aunt, friend, and so much more. I am not a disease. I am a fighter, and we can all win this!!”

Lisa Wilson is a 36-year-old woman from Columbus, Ohio who was diagnosed with scleroderma in 2009. She spent the entire year prior to her diagnosis with a host of symptoms that she says, “like puzzle pieces, were hard to put together. But, once they were, I got my sanity back somewhat”.
At the time, Lisa was in her late twenties and an active young woman working two jobs, as a paramedic in the emergency room of Columbus’ Nationwide Children’s Hospital and as an instructor/preceptor for Columbus State Community College. She also started nursing school at the age of 28 after deciding that she would like to do more in medicine; however, she soon began to experience severe bouts of fatigue so bad that, on some days, she couldn’t get out of bed. Lisa says, “ I thought it was my work and school load, so I switched to the part-time nursing program. However, a host of other terrible symptoms soon followed, including severe heartburn, joint pain and Raynaud’s attacks in her hands and feet. During these spells, her hands and feet would get so cold that they would turn purple and then white. Then, they would painfully come back to life and regain normal color and feeling. Months into the progression of these symptoms, Lisa lost fifty pounds, quit nursing school and had to take a leave of absence from both jobs.

“Being a paramedic and in nursing school at the time I became ill may have saved me,” says Lisa. “I became my own advocate and had a great medical knowledge base so I set out to use it. I stood up to doctors who pushed me aside as crazy and so easily dismissed me saying I was a healthy 29-year-old who needed depression meds. I fired some of my doctors (yes you can do that); I did tons of research and kept/found the doctors I needed to get my answers.”

“In the fall of 2009,” Lisa continues, “my doctor called me and asked me to come in to see her. She had, after months of trying to help me and running every test in the world, got the results of an auto immune blood work panel I requested her to run. For some reason, I felt overjoyed when she sat me down to confirm I did have something wrong with me; she told me she was certain I had scleroderma.”

Although Lisa says she was briefly relieved and joyful that she had finally reached a diagnosis, she soon learned there was no lasting joy to be had in her diagnosis, as the type of scleroderma she had involved her internal organs. She says, “basically my inside connective tissues in areas have hardened and no one can say what will get better. But, they can tell you to count on it getting worse. I was so confused as to why me – a question I try not to ask myself because there is no answer. I was mad at the world for a while.”

Despite her struggle with accepting her diagnosis, Lisa went on to join her local Scleroderma Support Chapter and, three years in a row, hosted and chaired “Stepping Out to Cure Scleroderma” walks in her hometown, raising over $20,000 to help support this cause that is so incredibly personal to her. Unfortunately, this cause became even more personal to Lisa and her family this past year when her younger sister, at the age of 25, was also diagnosed with scleroderma. Lisa explains, “I prayed for months for them to find out why she was sick, but also prayed it was not scleroderma. Her diagnosis turned my world upside down. I was mad again. I didn’t understand. Why her? She has a 5-year-old son; she’s so young and beautiful. I don’t want her to have to endure an ounce of pain or suffering like I have been for six years. I want her to live a long healthy life, have more babies and finish her schooling. Her disease has progressed quickly and she gets sicker by the day. My heart is broken, as are my parents. Two of their three children have this terrible disease and they are often overwhelmed.”

When I ask Lisa what the doctor’s have said in regard to the fact that both she and her sister have been diagnosed with the same disease she says, “My doctor at Cleveland Clinic, Dr Chatterjee, who is top of the field in Scleroderma, confirmed he had or has patients who are related and that evidence is slowly emerging that other siblings or parents/children have Scleroderma. I think it’s something in the future that may emerge but as you and I both know too well all things in Scleroderma research take time. “

Lisa continues,, “I want to see a cure for scleroderma before my time on the Earth is done. I want to save my sister and all those who suffer. I want people to know what this disease is, what it does to you – the good, the bad and the ugly. I want to spread awareness, raise money and find a cure. And, I also want people who are newly diagnosed or those who are sick but don’t know what’s wrong to know that it’s okay. We can help them navigate and try to ease their fears.”

“Even though I am still mad at times,” she continues, “I have also found a lot of peace and that has helped me greatly. Optimism helps greatly, too. Six years ago I felt like I got a death sentence; last year I felt my sister got hers. But, I don’t feel that way anymore. I feel fueled to fight, stay strong and educate and advocate!”

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Rachel’s Story

Rachel Schultz is a 42-year-old wife and mother from Saratoga Springs, NY. She and her husband Jim have been married for 17 years and have a 22-year-old son and a 16-year-old daughter. Rachel is also the proud grandmother of a beautiful 2-year-old girl who she said, “I love to pieces.”

In June 2010, she was diagnosed with Raynaud’s Phenomenon, Limited Scleroderma and Sjogren’s syndrome. Raynaud’s Phenomenon is a disorder that affects blood vessels, most often in the fingers and toes. With Raynaud’s Phenomenon, the body’s reaction to cold or stress is stronger than normal. It causes blood vessels to narrow faster and tighter than normal. These episodes are often referred to as an “attack.” During an attack, the fingers and toes can change color, from white to blue to red. Due to the lack of blood flow, they can also feel cold or numb. As blood flow returns, fingers and toes can throb and tingle. Limited Scleroderma, sometimes referred to as “CREST Syndrome,” means that only limited areas of the skin have been thickened because of the disease. CREST stands for:

Calcinosis – calcium deposits under the skin and in tissues

Raynaud’s Phenomenon

Esophageal dysmotility – causes heartburn

Sclerodactyly – refers to thick skin on fingers

Telangiectasias – enlarged blood vessels that appear as red spots on the face and other areas

Sjogren’s (SHOW-grins) syndrome is a disorder of your immune system identified by its two most common symptoms — dry eyes and dry mouth. The mucous membranes and moisture-secreting glands of the eyes and mouth are usually affected first — resulting in decreased production of tears and saliva.

Rachel had always been very active and full of energy. Her nickname was “the Energizer Bunny.” Not only was she working, she was also in an online program to obtain her RN degree. But, all of that quickly changed as her symptoms began to present.

“I went from working three jobs and taking care of everything – my house, the bills, the children, our pets – and still having energy, to wanting to do absolutely nothing but sleep. I could not function. I felt as though I would wake up in the morning and had been run over by a freight train every night while I slept. My body ached all over, as if I had the flu, only it didn’t stop, no matter what I tried. My house literally fell apart. I couldn’t work, as I just couldn’t get myself out of bed in the mornings anymore. I went from being a highly functioning individual to someone not even recognizable.”

Like many Scleroderma patients, Rachel has battled not only the debilitating physical effects of this disease, but has also endured the stressful toll this disease can take on patients and their families. Because she had not yet been given any formal diagnosis, Rachel’s inability to function as a normal healthy person began to cause her marriage and family to suffer. To make matters worse, Rachel and her husband had to place their home on a short sale after it was broken into and their things were destroyed. Rachel said that this “about destroyed my marriage and our family.”

Of the specific changes in her health that led to her eventual diagnosis, Rachel said, “My initial symptoms were severe Raynaud’s attacks, horrible acid reflux, and tight hard skin with patches of dark and light skin. I was first referred to a dermatologist, who witnessed my Raynaud’s attack in his office, and was then referred to the rheumatologist I now see, who suspected right away that it was scleroderma.”

Although the family had an uphill battle from this point, her diagnosis seems to have actually played a critical role in helping them to rebuild. “Once I was finally diagnosed,” said Rachel, “my husband was able to overcome his resentful feelings towards me. Before my diagnosis, when I was unable to function and not work, he believed I was being lazy, that nothing was wrong with me, that I just didn’t want to work. He, like myself, had NO idea that I was in fact sick – very sick – and, that it was just the beginning of a full-time battle for my health. After being diagnosed, I offered him every option of dissolving our marriage. He did not want that at all. He and I had many things to discuss and plan for – we still do. Scleroderma is everything but predictable. But, we continue to work together and communicate with each other better, to continue to grow and stay together. I was also approved for my Social Security disability, which has helped us financially as well. We are still continuing to rebuild.” Going forward, Rachel said, “I would say my motto would be ‘there is a reason for everything.’ We may not ever understand why, but have to trust that there is a reason we face the things we do. I think remaining positive and moving forward is key to inner strength and peace of mind. I am grateful for everything I have or don’t have. As long as my family stays together and we work together, stay strong and remain focused on what is important, we will have a better future. We should not be afraid of change or taking chances, but embrace them. Always try to fix things before giving up or throwing them away.”

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1.Types of Scleroderma. (n.d.). Retrieved from http://www.hopkinsscleroderma.org/scleroderma/types-scleroderma/

2.What Is Raynaud’s Phenomenon? Fast Facts: An Easy-to-Read Series of Publications for the Public. (2014, November 1). Retrieved from http://www.niams.nih.gov/Health_Info/Raynauds_Phenomenon/raynauds_ff.asp

3.Sjogren’s syndrome. (n.d.). Retrieved from http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275

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Joey’s Story

Joey Barlow is a 43-year-old woman from Chester County, PA. She is the proud mother of two teenage sons, Tyler, 18 and Jake, 16. This past November Joey married a long time friend, Tim, who she describes as a “wonderful, patient and loving man.” And, she has been battling systemic scleroderma since 2009.

When Joey was diagnosed with systemic scleroderma, she says, “It was a very bad experience. After seeing a local rheumatologist and going through tons of tests, he called and gave me my diagnosis and told me there was no cure, so the next advice he could give me was to take Tylenol.”

Through the extensive research she had conducted, Joey learned that the first thing she needed to do was get another doctor. “I left and went to my family doctor who originally sent me to Johns Hopkins Scleroderma Center,” she says. “After the process of gathering all my records, and being accepted as a patient of the Johns Hopkins Center, I was told that they were not in my insurance network. Back to the drawing board. I then went to Jefferson Hospital and met my current doctor who I love and respect. Without her, I truly believe I would not be here today.”

Prior to her diagnosis, Joey kept herself very busy as a single mom. She says, “I was always on the go with my kids. Friends used to tease me that I only had two speeds – super fast and asleep.” She was classroom mother for both of her children for many years and even completed her first 5k the year prior to her diagnosis.

Joey’s life has changed rather dramatically since. She used to be the executive assistant to the CEO of the Greater Brandywine YMCA until October of 2013 when, after spending almost a month in the hospital with multiple admissions, Joey and her doctor decided it was best for her to stop working and focus on her health.

“I have pulmonary fibrosis, Raynauds, Sjrogrens, masses in my brain, pretty extreme cognitive issues, gastroparesis, esophageal dismotility, frequent nausea, extreme joint pain and fatigue, blood clots and aneurysms in my hands, and the tendency to aspirate. I think that covers the main issues, but new things pop up all the time.”

She is now forced to remain home most of the time and focus on getting plenty of rest. “It has been hard for me to ask for help and accept help.  I have learned that I don’t have a choice, I need to accept help when I need it.  There are many days I can’t drive due to my pain meds.  I have a lot of doctor appointments and tests. My kids are growing up so quickly, but I am so blessed and grateful that I am still here and can enjoy them.  They are both understanding and very supportive.”

In speaking of her recent marriage to her husband Tim, Joey says, ”We had a large traditional wedding.  It was wonderful.  I hear stories from other people with scleroderma about their spouses not understanding them or their disease.  My husband is by my side through it all.  Works hard every day.  When I am in the hospital he is with me every night until I fall asleep.  He would do anything for me. I am so blessed.”

When I asked Joey what advice she would give someone who was recently diagnosed with scleroderma, Joey says, “Be careful what websites you use for research. I try to use the Mayo Clinic or Johns Hopkins. I know the doctors prefer us to stay off the Internet, but knowledge is power. Be your own advocate! Know your body and log info, take pictures, take notes. Don’t give up hope!”

To those who do not have scleroderma and know little about what life is like with such a disease, Joey says, “Yes, we look normal and sometimes even healthy. But, please don’t judge a book by its cover. This disease is not easy in any way. Ask questions – I love to educate people about the disease, it’s the only way to spread awareness. Please don’t glare at me for parking in a handicap parking spot. You have no idea what is going on in my body and the pain I am in every day.”

So many scleroderma patients who feel that their peers or family members simply do not understand what they are going through voice this type of frustration. And, as Joey mentions, the fact that they look or seem healthy makes it difficult for others to empathize. But, the pain, both physical and emotional, is very real for scleroderma patients. And, ultimately it is our goal through Project Scleroderma to help everyone understand what life is like for these patients, awareness is crucial.

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Jennifer’s Story

46-year-old Jennifer Hulme was born and raised in Annapolis Valley, Nova Scotia, where, in her junior year of high school, she met her future husband Steve. Jennifer and Steve have now been together for 30 years and married for the past 18 years. The couple currently lives in Nanaimo, British Columbia and both have full-time careers in health care.

Jennifer and Steve live a very active lifestyle and Jennifer is a self-proclaimed “health nut”, who enjoys cooking gourmet foods and savoring fine wine. She says she is “a pescatarian who focuses on organic whole foods as much as possible.”

Being that Jennifer is incredibly active and obviously very health conscious, it is not difficult to see why it would come as a huge shock to her when she was told she had an autoimmune disease.

In June 2014, while training for an upcoming marathon, Jennifer says she began to notice unusual muscle pain and stiffness, typically occurring early in the morning and at times even causing her to fall on her face as a result of unexpected muscle weakness. She then developed puffy hands and feet, followed by symptoms of Raynauds in her hands and feet as well. (Raynauds is a disorder that affects the blood vessels in the fingers and toes).

Jennifer’s journey to an explanation for these symptoms has been rather complicated, as is the case for many patients who deal with autoimmune related issues.

In August 2014, after blood results indicated Scleroderma, Jennifer’s physician, who had some previous experience with the disease, proactively arranged a rapid referral to a rheumatologist due to the quick onset and increase of her symptoms.

The rheumatologist diagnosed Jennifer with Diffuse Scleroderma, giving her a “worst case scenario” prognosis.

In October of 2014 she had a follow-up appointment with a different physician, also a rheumatologist, who then diagnosed her with evolving CREST Syndrome. This doctor, who Jennifer says is very experienced and highly regarded, was honest with Jennifer and told her that she did not have much experience with Scleroderma and, as such, referred her to see Dr. Jim Dunne at the Vancouver Scleroderma Clinic located at St.Paul’s Hospital in Vancouver, British Columbia.

This led Jennifer to her most recent appointment just a few weeks ago with Dr. Dunne. She says, “this appointment was like a breath of fresh air, not because I was any better, but because I finally had an opportunity to talk to someone who was well experienced with what I was dealing with and, most importantly, willing to take the time and answer my questions.  He informed me that I do not ‘yet’ have all of the 9 point scale criteria for a full diagnosis of Scleroderma, according to the 2013 ACR/EULAR Classification Criteria.  Consequently, I am now diagnosed as having Undifferentiated Connective Tissue Disease (UCTD) with a ‘significant’ likelihood that it may become full blown Scleroderma over the next six months – of which close follow-up is very important.”

As a result of her symptoms related to Scleroderma, Jennifer has since left her job as a pharmacist and now relies on long-term disability. She says, “I do not see myself being able to resume my career any time soon, if ever. I likely will never be able to run again and can tolerate a mild hike for 5 kilometers at best, with my knees or lower legs going numb typically after three kilometers.”

Having to modify their active and adventurous lifestyle together has not been easy for Jennifer and her husband, who say they love to be “out sailing, cross country running, mountain biking, gardening, or simply hiking with our dog and exploring the world!” Yet, the couple remains determined to find ways to allow them to still enjoy this lifestyle together in any way they can.

After some extensive research, Jennifer and Steve finally came upon what seemed like the perfect solution – the semi-recumbent style of tandem biking.

“A traditional tandem bike never appealed to us” says Jennifer. “It is too large and bulky; one person is always facing the backside of their partner. It’s not naturally conducive to casual conversation; and, the traditional upright riding position is now very uncomfortable, if not intolerable, for me.

The semi-recumbent tandem bike, seen in the picture below, addresses all that and more.

Jennifer explains, “It is much more compact in size and inherently friendly for casual conversation. Both riders truly share a mutual riding experience. Plus, it allows the stoker (secondary rider) to simply stop pedaling and rest whenever they feel the need.  The latter benefit is critical, as it is the only way I would safely be able to ride a bike again – or anyone who may have an autoimmune disorder; related medical condition that causes fatigue / muscle atrophy; physical challenges of some sort; or even short term injuries!”

There currently are several manufacturers of a semi-recumbent tandem bike but, they are either in Europe and only offer a static, one-size-fits-all design or they are custom built with electric assist being an afterthought. And, when you factor in shipping and related cross border duties, the expenses can be extensive.

What Jennifer and Steve have found is that it is more economical for a couple in their position to simply have a semi-recumbent tandem bike custom built by a local bike designer. Jennifer says, “You end up with a far better product that is custom fitted according to each users specific needs.”

Inspired to create a product that will not only help them in their own situation, but also in hopes of helping others dealing with similar circumstances, Steve is currently working to develop a prototype design to be open sourced, so it can be duplicated and modified by any couple in a similar situation anywhere in the world with current ‘off the shelf’ materials and a local bike manufacturer.

“It is definitely a small, specific niche market – but incredibly versatile for anyone who may enjoy biking together.  Plus, the substantive improvement in quality of life and therapeutic benefits for someone who may have medical/physical issues that would normally restrict them from any such physical activity is enormous,” explains Jennifer.

Developing both the prototype bike and web design to keep it ‘open sourced’ and available to all is estimated to cost around $25,000. And, therefore, Jennifer and Steve are currently seeking donations worldwide to help make this project a reality and further raise awareness for both Scleroderma and the myriad of autoimmune disorders in general.

For more information on Jennifer and Steve’s project or to help support them in their mission please visit www.sherpasrt.com

For more information about Scleroderma, patient support groups, Scleroderma treatments and the research that is being done to help cure this disease please visit www.SclerodermaAware.org

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Cat’s Story

Cat Gibbons is a 49-year-old woman from Connecticut who was diagnosed almost 10 years ago, just shy of her 40th birthday, with Scleroderma. Cat’s diagnosis came after years of symptoms that went misdiagnosed. Cat’s doctor, convinced that the symptoms she suffered from were the result of Lyme disease, was in true shock when her diagnosis with Scleroderma was finally discovered. Most surprising about Cat’s diagnosis, however, is that her mother died from Scleroderma at the age of 46 in 1974.

Cat says, “ There is not a lot of information regarding my mother’s diagnosis and subsequent death (a mere 4 months after her diagnosis). I believe she may have had symptoms prior to diagnosis, (however), she and my dad thought she had severe arthritis.”

At the age of 20, when Cat’s fingers started turning pure white, red and blue, she was diagnosed with Raynaud’s phenomenon, but thought nothing of mentioning her mother’s diagnosis and death as she did not know there was any correlation between Raynaud’s phenomenon and Scleroderma.

A year after the birth of her son, Luke, Cat got married at the age of 25. Unfortunately, the marriage only lasted 4 years and Cat then became a single mother. Throughout her twenties and thirties Cat was very active as an avid skier, even racing in the winter, and swimming in the summer. Cat says “During the two years prior to my diagnosis, I was dealing with a great deal of pain in my knees. I also had tremendous and painful issues with my esophagus, thinking all the time that it was just heartburn. Every time I skied, swam or hiked I would spend the nights dealing with burning pain in my knees. My knees ended up having ugly and painful bumps under the skin and on top of my knee caps.”

After seeing her primary care physician for her worsening and painful symptoms, she was recommended to see a physical therapist. Unfortunately, this therapy seemed to get her nowhere. It wasn’t until one day, upon retuning home from work, Cat stepped out of her car, heading for her front door, and found she could not walk. Cat says, “ I had to crawl to the door of my house.” It wasn’t until then that her doctor had her sent for x-rays and after learning of her mother’s history had her blood work tested as well, which returned a positive ANA result confirming that Cat did indeed have an autoimmune disease. Upon her follow up appointment, the doctor confirmed that this disease was Scleroderma and that the bumps on her knees were calcium deposits (a common symptom for many Scleroderma patients).

Following her diagnosis with Scleroderma, Cat has since been diagnosed (three years ago) with Fibromyalgia and just six months ago with Lupus as well.

Now that Cat is dealing with Scleroderma, Fibromyalgia, and Lupus, her symptoms and challenges on a day-to-day basis have become all the more complex as well.

For many Scleroderma patients, as was the case for Cat, it can take years to reach a true diagnosis of Scleroderma. This process is not only frustrating but can also play a major role in the patient’s prognosis as well as the treatment options available to these patients.

It is my hope that in sharing stories such as Cat’s we can not only create more awareness for Scleroderma but also that we can help highlight the importance of awareness in relation to early diagnosis. The earlier a patient is diagnosed with Scleroderma, the sooner they can connect with a Scleroderma specialist who can set them on a path to the best and most effective treatments.

Please continue to follow our blog and help us spread each and every unique patient story as we move closer and closer to a greater level of awareness for this disease.

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Briana’s Story

Briana Garcia is a 33-year-old wife and mother from Stoneham, Massachusetts. Three years ago Briana was diagnosed with Systemic Scleroderma. Three years prior to her diagnosis Briana gave birth to a baby girl. In the first three years of her daughter’s life, Briana was a vibrant, healthy and active mother to her daughter and wife to her husband. However, along with her diagnosis came the sudden and extreme onset of debilitating symptoms, including: swollen hands, tightened skin, extreme pain in her hands and legs, and difficulty breathing. As a result, Briana had to leave her job and file for disability. Due to her lung involvement, Briana’s doctors had her complete a year of intense treatment. However, unfortunately, this treatment did not help.

Briana now plans to undergo a different type of treatment that may help to stop the progression of this disease, however, this treatment process is very costly. In the video below Briana explains more thoroughly her struggle with Scleroderma. If, after watching her video and hearing her story, you would like to help support Briana’s fundraising efforts to receive the treatment she needs please visit her fundraising page at http://www.gofundme.com/3a2tng.

For more information about Scleroderma, patient support groups, Scleroderma treatments and the research that is being done to help cure this disease please visit www.SclerodermaAware.org

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Lauren’s Story

“My entire life I always felt a little different. Even when I was a child it just seemed that everything was physically much easier for everyone else than for me.” After finally reaching a diagnosis to explain the symptoms she had battled most of her life, Lauren Silinsky (age 29, from Chicago IL) continues, “It isn’t until looking back now, that the puzzle pieces fit together”.

Lauren’s diagnosis began with a genetically inherited disorder called Ehlers Danios Syndrome, (EDS for short). And doctors believe that this, combined with environmental triggers and immune dysregulation, ultimately led to the development of Systemic Sclerosis (Systemic Scleroderma). Though Scleroderma was suspected since 2009, it wasn’t until a visit to the Mayo Clinic in 2014, when Lauren was 28 years old, that she was officially diagnosed.

Lauren suffers from common Scleroderma symptoms such as Raynaud’s phenomenon, chest pain, leg swelling, muscle and joint pain, and neuropathies, however, the worst of her symptoms occur in relation to her gastrointestinal tract. Lauren explains, “The disease has essentially shut down my gastrointestinal system. I am primarily on an all-liquid diet and must rely on gravity often to help out with much of the work. I try to have solid foods about once a week and treat myself to a dinner, though I always (later) pay the price.” The week of her 29th birthday Lauren was also diagnosed with osteopenia (reduced bone mass of slightly lesser severity than osteoporosis).

Lauren’s particular diagnosis of Systemic Scleroderma causes internal organ dysfunction, but not the hardening of the skin component, which is common in many other cases. In contrast, her diagnosis of EDS is characterized by smooth velvety and stretchy skin. With her sense of humor still in tact, Lauren jokes, “hopefully the two diseases will cancel each other out so that the skin thickening (caused by Scleroderma) never occurs… I think a sense of humor can be key to survival!”

Although Lauren felt different when she was younger, and often was sick, she wonders if her delayed diagnosis may have been a blessing after all. Being that she was not seen as “sick” from an early age she still participated in sports and other activities and also maintained a broad social circle. Lauren says she is grateful for her family and friends, as they were the much-needed distraction from her daily pains and odd symptoms that she endured throughout her childhood. In later years, she also lived overseas, traveled throughout Europe, into Northern Africa and to the Middle East as well. Lauren says “Granted, I confronted my fair share of challenges, but I wonder if having the label of being “sick” earlier on would have hindered me from accomplishing these goals.”

Against the advice of some of her previous doctors, Lauren still continues to work full time in hospitality as a concierge at a luxury hotel. She did, at first, heed the doctor’s advice. Lauren took a 3-month leave from work only to find that being home full time with nowhere to be and no one holding her accountable was not beneficial for her mental health at all. Lauren says, “I need a reason to get up and keep going in the morning. I need to feel like someone or something depends on me to be there. (Working full time under these circumstances) is an incredible challenge, one that I believe is only feasible if you love what you do.” And so, Lauren finds purpose and inspiration to fight her battle through her work as a concierge. Of her job, Lauren says “I get to take care of people all day, which makes me feel empowered, not so helpless.” Her job allows her the opportunity to make arrangements for other people to enjoy their stay in the city the she lives in and loves. Often Lauren is able to make the day of her guests more special by arranging highly sought after reservations for some of the best dining establishments her city has to offer. Lauren says, “I may not be able to eat much any more, but I can live vicariously through the experiences of guests and share in their happiness.”

Like most Scleroderma patients, Lauren has very many personal hurdles to conquer every day, both physically and emotionally. Lauren says, “ Since my diagnosis, I think the hardest part is finding balance between just the right amount of denial and just the right amount of acceptance. I am an independent spirit and want to believe I can do it all on my own. That being said, it is a disappointment to unload half a load of dishes and stop to realize I am too weak to continue. I used to snowboard down mountains and now I can’t even do the dishes!”

Despite her frustrations Lauren’s determination and positive attitude do not seem to be easily hindered. And this is clearly evident as she offers advice to others living with similar circumstances, “ I think the key is to simply accept where you are in the present moment, and stop trying to compare yourself to (who you were) pre-diagnosis. Perhaps, I can’t snowboard anymore, but it leaves me more time to work on my paintings. Having a positive outlook is key. I may not be able to run anymore, but as long as I’m walking, I’m still moving forward.”

For more information on Scleroderma, patient support groups, Scleroderma treatments and the research that is being done to help cure this disease, please visit www.SclerodermaAware.org

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Welcome

Welcome to Project Scleroderma!

Please feel free to take a look around our site and get to know the Project Scleroderma experience. This is a project that we encourage you to be a part of. Our goal is to raise awareness for Scleroderma Research through the production of a documentary about the disease. We are a grass roots movement working to accomplish this goal with the support of donors and volunteers looking to help spread the word about Scleroderma.

What is Scleroderma?

Scleroderma is a connective tissue disease that involves changes in the skin, blood vessels, muscles, and internal organs. It is a type of autoimmune disorder, a condition that occurs when the immune system mistakenly attacks and destroys healthy body tissue.

We are currently working to raise the necessary funds to produce our documentary. We will be launching a campaign on Kickstarter.com within the next few months. Please stay tuned for more information and updates!

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