“I Have a Disease, But I am Not Sick”
Alejandra Schoo’s Vasculitis Journey
At 57 years old, Alejandra described herself as someone who is constantly seeking growth, both personally and professionally. Living in Buenos Aires, Argentina, with her husband, Rodrigo, and close to her adult children, Paloma and Facundo, family and emotional connection have always been central to her life. She treasures long lunches with nieces and nephews, conversations with friends, and the relationships that sustain her.
In April 2025, her life changed unexpectedly. What began as flu-like illness quickly evolved into something far more serious. “It began with a fever, and I thought it was the flu,” Alejandra recalled. At first, her blood tests appeared normal. But new symptoms rapidly emerged: severe headaches, difficulty opening her eyes, loss of appetite, dramatic night sweats, and a rash spreading across her chest and back.
As the days passed, her condition became increasingly frightening. “There were moments when I could barely stand because I felt sudden weakness in my legs,” she said. She also developed intense back pain at night and profound exhaustion.
A Difficult Diagnosis
Alejandra credits one internal medicine physician, Dr. Juan Ignacio Ruiz, with helping save her life.
“I was fortunate to be treated by Dr. Ruiz, who carefully analyzed my situation, investigated possible causes, ruled out diseases, and ordered many tests within a few days,” she shared.
Even before a diagnosis was confirmed, Dr. Ruiz made the decision to begin corticosteroid treatment. “I believe the care I received and the decision to begin corticosteroids before having a diagnosis saved my life,” she said.
Two months after her symptoms began, doctors finally identified the cause: medium-vessel vasculitis. The breakthrough came only after spots appeared on Alejandra’s legs, allowing doctors to perform a biopsy.
Throughout the process, the collaboration between Dr. Ruiz and her rheumatologist, Dr. Cecilia Asnal, both from Hospital Alemán de Buenos Aires, deeply impacted her. “Dr. Ruiz called me every day to check on how I was doing, even though I had never met him before these symptoms began,” she said. “Both he and Dr. Asnal told me I could contact them whenever I needed to.”
Before her diagnosis, Alejandra had never heard of vasculitis.
The Visible Toll of Treatment
Today, her treatment includes daily CellCept®, corticosteroids, and rituximab infusions. While treatment has helped stabilize her condition, the journey has not been easy. One of the hardest adjustments was the physical transformation caused by steroids. “My face became very swollen. I did not like seeing myself that way,” Alejandra shared. “I felt sad about what was happening to me, and I did not feel good when I looked in the mirror.”
Vasculitis also forced her to step away from activities she loved. Before becoming ill, she played padel with friends three times a week. “I had to stop playing padel, which I loved,” she said. Even now, although treatment has helped her regain much of her physical appearance, she still does not feel confident enough to return to the sport.
Alejandra’s professional life changed, too. As a business consultant who spent long hours standing with clients, she had to reduce her schedule. “I stopped seeing more than one client per day in person,” she explained.
A New Way of Living
Daily routines shifted in ways both large and small. Alejandra changed her diet to reduce inflammation, began wearing different shoes because of ankle pain, and adjusted her social life to prioritize rest. “My friends know that if we go out for dinner, it needs to be early because if I go to bed late, it takes me much longer to recover.”
Still, she has adapted with resilience. Today, she walks regularly and practices yoga. Rather than focusing on what she has lost, she tries to embrace what remains possible. “I have learned to live with what I have instead of constantly thinking about how life used to be,” she said. “I want to enjoy each day.”
Gratitude Amid Uncertainty
The emotional toll of vasculitis has been profound but so has the support surrounding her. “Seeing the doctors work together and support me with warmth and professionalism still moves me deeply,” she said. “To me, they are my little angels.”
Her family and close friends rallied around her in different ways — through hugs, meals, conversations, and simply being present during difficult moments. She is especially close to her siblings and said their support has meant a great deal throughout her journey. “I am usually a very positive person, and I truly enjoy caring for my loved ones,” Alejandra said. “Honestly, I felt immensely loved and deeply grateful. The pain is still there, but it is much easier to bear this way.”
When she began rituximab infusions, she decided not to face treatment alone. Instead, she invited friends to accompany her. “I asked for help,” she explained. “I invited them to join me for what I called a ‘spa day’ together — breakfast and meaningful conversations without interruptions.” That transformed the experience. “Their support during each session helped me experience the treatment as an opportunity rather than something frightening.”
One challenge that remains is navigating other people’s expectations as her condition improves.
“People who love me sometimes say, ‘You’re better now, right?’” she said. “They need to see me doing well. During difficult moments, I would tell them that no, I’m not okay, and I ask them not to ask me that, expecting me to say that I am.” Those emotional ups and downs became both a challenge and an important learning experience.
Living with Vasculitis
Although she is not yet in remission, Alejandra continues moving forward with determination and perspective. She spends time learning about vasculitis through international organizations and patient communities while listening closely to her body and discovering the routines that help her feel strongest.
“I have a disease, but I am not sick,” she said. She understands that some people may misunderstand the phrase, but for her, it reflects a choice about how to live. “It means that you can choose to live your life and enjoy it — even differently than before,” she said. “It is still my life, and I celebrate it every day.”
Alejandra dreams of returning to the mountains she once loved climbing and hopes one day to play padel again. But even if those goals look different now, her outlook remains grounded in gratitude and presence. “If I cannot reach the top, I will walk as far as I can,” she said. “What I have learned is to enjoy whatever I experience each day.”
A Message to Other Patients
For those newly diagnosed with vasculitis, her advice is heartfelt and direct: “Listen to your body. Ask for help. Cry when you need to. If you have family and friends, ask them to hold you tightly.”
She also encourages patients to seek compassionate medical care built on collaboration and trust.
“Surround yourself with good professionals who work together as a multidisciplinary team and who are also good people,” she said. “Trust in doctors. Celebrate your life every day.”