“While you need support and understanding, you avoid hugs because your whole body hurts”
Sandra Xiqués is not only a member of the DocTIS’ Advisory Board but also a patient living with Rheumatoid Arthritis. Her journey shows how she manages the challenges of a chronic illness while balancing family life and her passion for design. Through her experience, Sandra gives a personal perspective on what it’s like to live with an autoimmune disease. Her involvement with DocTIS reflects her desire to contribute to medical research and help improve treatment options for others with the same condition.
Please tell us who you are and the condition you suffer from.
My name is Sandra Xiqués Costa, I’m 52 years old, and I’m from Barcelona. I currently live in a small village in Penedès with my husband, Eric, and my two daughters, Dàlia (10) and Asha (2). I studied economics and also jewelry-making. My passion is designing! Once Asha is older, I plan to reopen my jewelry workshop. I have suffered from rheumatoid arthritis for 14 years.
How did you find out you had Rheumatoid Arthritis?
Perhaps the first symptom was extreme fatigue and an intense pain attack in a joint while sleeping. I would wake up screaming from the pain—one night it was my left elbow, two weeks later, my right hip. I would take a painkiller and move on without giving it much thought. At that time, I was under the stress of managing my jewelry business during an economic crisis and simultaneous emotional strain of trying to get pregnant. Undoubtedly, stress triggered my illness.
At 38, my fingers swelled up and the inflammation didn’t stop—it only worsened. It spread to my toes, ankles, wrists, shoulders, and knees, always symmetrically. I started investigating and read on the Spanish Society of Rheumatology’s website about rheumatoid arthritis: “more common in women”, “often appearing in your thirties”, “affecting joints symmetrically”, and “causing morning stiffness”. I thought, That’s me!
After several tests, I was officially diagnosed. Accepting it was hard. I was hoping for a positive pregnancy test and instead received a chronic illness diagnosis—and I felt awful.
How does Rheumatoid Arthritis manifest for you?
Currently, my condition is well-controlled, referred to as “in-remission”. This doesn’t mean zero inflammation or flare-ups, but it allows me to lead my life fairly normally. Days without any pain are rare. Often, I sense a flare coming because my mood worsens, followed by pain in a random joint—spine, wrist, hip, foot, or shoulder. It feels like the joint is on fire, and I can’t move it due to pain and swelling. Fortunately, with treatment, intense pain only lasts a day or two now.
I do, however, have irreversible damage in my right wrist and knees from when my disease was uncontrolled.
How has the illness affected your quality of life and relationships?
It’s hard to understand an invisible illness. While you need support and understanding, you avoid hugs because your whole body hurts. My doctor once said that taking care of my daughters and managing my arthritis was enough work. Over time, I’ve realized she was right. Even so, I hope to return to work, albeit at a slower pace.
How has the disease evolved since your diagnosis?
In my case, I chose not to take methotrexate because it can cause miscarriages, and my arthritis went untreated for over a year. Naturally, it worsened until I could no longer cope and eventually collapsed. I couldn’t even walk and spent nights half-asleep, groaning with every exhalation. That was when I switched hospitals and was prescribed a treatment with Etanercept 50 mg, one of the so-called biological medications that modulate the immune system without weakening it. After the first injection, I was able to take one of the most refreshing naps of my life.
From then on, I improved day by day, slowly but steadily, over the next seven or eight months. Etanercept was my first and only treatment. I was very fortunate to respond so well to it. That’s not always the case, as I learned while participating in the Advisory Board for DocTIS. Since it’s not toxic and controls the disease so effectively, I was able to undergo various IVF treatments, have two fantastic pregnancies, and enjoy several years of breastfeeding.
Beyond treatments, what helps you improve your quality of life?
I take good care of myself: swimming, eating healthy, and avoiding alcohol. Even simple things like driving an automatic car with a parking cameras or easy-to-open furniture drawers greatly improve my life.
How did you learn about DocTIS, and what drew you to the project?
My doctor, Sara Marsal, told me about her research project years ago. I’ve always been curious about my condition, which has led me to read scientific articles on autoimmune diseases. I was fascinated that DocTIS used Artificial Intelligence for research before it became so popular.
What made you join the Advisory Board?
I found it interesting to contribute from the patient’s perspective, as an end-recipient of years of research… and I would love to help others like me.
What are your expectations for DocTIS?
I hope genetic studies can determine which biological treatment would be most effective for a patient or if a combination of treatments would be better. In a disease that snowballs over time, stopping it with the best tools as early as possible might be very close to a cure.
