Clermont, Florida (United States)
Scleroderma Stories Issue 5
Please introduce yourself
My name is Aneila Vargas Pagán. I am 28 years old. I was born in Puerto Rico, but I moved to Florida almost 6 years ago. In May, I graduated with a bachelor’s degree in Health Services Administration. I also love to draw!
Could you please tell us about your journey toward being diagnosed?
The first symptom I noticed was two instances of skin discoloration — one on my hand and one on my body. I noticed the skin on my fingers would break, peel, and bleed. Because I worked as a barista at the time, I thought it was because of the exposure to chemicals or because of the hot and cold temperature difference. Not thinking much of it, I just started applying creams at night and wearing gloves.
Then, I noticed I was sleepier than usual and that I was developing patches on my face that resembled rough crocodile skin. At this point, my family told me to see a doctor, but their diagnosis was that these problems were stemming from me being overweight. I ended up visiting three primary care centers. After some tests on my liver, the third doctor diagnosed me with fatty liver disease.
The diagnosis didn’t solve any of the problems I was feeling, and at this point, my hands also became extremely bony, so I finally visited a rheumatologist. She sent me for a test in California that checks for 60 different types of autoimmune diseases, which is finally when I got my scleroderma diagnosis. This July, it will have been three years.
Alongside scleroderma, my doctors diagnosed me with polymyositis, which, broadly, is irritation and inflammation of the muscles. This explained a lot of the pain and fatigue I was feeling. It also was causing the fatty liver misdiagnosis; my muscles and sinuses were inflamed, not my liver!
What treatments and medications have you tried? What has worked for you?
I am currently on Cellcept. It is normally prescribed to patients who undergo organ transplants, which is why I was initially nervous to start taking it. It lowers the patient’s immune system, which was tough for me since I got COVID-19 four times during the height of the pandemic.
I take oral steroids for my polymyositis. It controls cortisol levels and slows down muscle inflammation, but its side effects include weight gain, especially around the face, creating the term “Moon Face.”
I also take Plaquenil to regulate the pain and inflammation in my hands, which is caused by arthritis. Finally, I was diagnosed with Raynaud’s syndrome, but living in Florida has kept it under control. I was prescribed Amlodipine, which is a medication for heart conditions, since it deals primarily with blood flow, but I have not had to take it.
Sometimes, changes in my diet or environment can cause a flare-up in my symptoms, so my doctor will raise or lower my doses accordingly. Overall, my treatment plan has definitely improved my symptoms. The medication for polymyositis, especially, is really effective. Sometimes, there are days when I forget about the pain.
What lifestyle changes have you made?
How did you manage your mental health and emotions following your diagnosis?
What changes to your mindset has your diagnosis brought about?
How have you connected with the online scleroderma community?
Tell us more about your Instagram page, @agirlwithscleroderma!
What are your hobbies and interests? How did your diagnosis affect your level of engagement with these?
How has your diagnosis affected your relationships with loved ones?
What about your ability to continue with school/work?
What advice do you have for other scleroderma patients?
Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.
Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at firstname.lastname@example.org