“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