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Patricia Espinal Ramos ‘22 has always been surrounded by community: The tight-knit family circle she enjoyed as a young child growing up in the ���ϸ����� Republic, the families she met while undergoing countless treatments and procedures at hospitals in Boston and Oakland, the staff and students she works with at a national nonprofit focused on combating social isolation, and the faculty who mentored her as a student at ���ϸ�����.

However, as a woman living with a rare genetic condition, Patricia has often felt disconnected – isolated – from others.

“I am no stranger to social isolation and its effects on my mental, emotional and physical health,” she says. 

The pandemic compounded this isolation.

“During this pandemic, I experienced all three forms of social isolation —physically isolated from family and friends, loneliness from the prolonged quarantine, and invisible to a society that undervalues the lives of people with disabilities.”

But, for the first time, Patricia realized that she was not alone with this experience.

“For many, the lack of human interaction and connection imposed by stay-at-home orders led to their first time experiencing social isolation,” she says. “For those who were familiar with social isolation, the measures provided an understanding of the impacts of social isolation on a global scale.”

This realization inspired her to better understand social isolation and how it has impacted not only her own life, but also the lives of others. Social isolation became the topic of her at ���ϸ�����. As part of her research, she also created a that explores the impact of social isolation during the COVID-19 pandemic.

When developing her thesis, Patricia drew on personal experiences and quantitative and qualitative analysis to examine how COVID restrictions shed light on the effects and misconceptions of social isolation.

“A variety of factors such as limited research, misconceptions associated with its impact mainly in older adults, and its interchangeability with loneliness, previously impeded people’s knowledge and understanding of social isolation,” she says. “Social isolation is an under-appreciated public health risk.”
Writing the thesis, she says, was “a journey of self-reflection.”

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Patricia realized that the isolation she experienced during the pandemic was very different from her earlier experiences with social isolation. This time, she had to restrict her interactions with family, friends and even care givers. Indeed, the pandemic led her to appreciate the connections she had with her community, while putting into perspective her past history with social isolation. 

“I realized that physical isolation was more difficult for me,” Patricia says. “While there were numerous ways to interact or communicate using various forms of technology — I missed feeling safe in a room full of people, and the comfort that comes from a simple hug or touch. 

“Realizing that my communities were still there but not getting the connections that I needed was difficult. But this also is what helped me with my thesis and really starting to focus my career on continuing to advocate for others.”

After graduating from the School of Liberal Arts and Education with honors this spring with a degree in Communication and Media Studies, Patricia is now drawing on her experiences and her research in her work as a fellow at Beyond Differences, a Marin-based nonprofit focused on inspiring students nationwide to end social isolation and create cultures of belonging for everyone. 

The role is a perfect fit for Patricia, says Dr. Brad Van Alstyne, assistant professor of communications and coordinator of online learning and development.

“She’s a natural born advocate,” he says. “Patricia will make a huge impact. She has a long nonprofit background and really understands the empathy involved to truly change things for the better with those she works with. She is truly one of the most amazing students I have had a chance to work with.”

Patricia was born with a genetic condition called mucopolysaccharidoses (MPS) type VI, a disease caused by an enzyme deficiency that typically presents itself between ages one and five. Four years older than Patricia, her brother Harold was already being cared for by MPS specialists at Boston Children’s Hospital when Patricia was born.

By age four, Patricia was joining Harold and her mom on those lengthy trips from the ���ϸ����� Republic to Boston. Harold, Patricia and mom, Jacqueline, traveled back and forth from the ���ϸ����� Republic to Boston for six or seven years, each time spending between one and two months in Boston, while dad, Jose, and middle sibling, Jose, remained at home.

Patricia’s family was always close, with parents, grandparents, aunts and uncles all living in the same neighborhood, providing a safe and nurturing environment for Patricia and Harold.

“Growing up, my parents taught us we could do anything and there were no limits. In the ���ϸ����� Republic we lived in a little bubble with most of my family. It was great, but we were sheltered.”

In the bubble, no one made fun of them. No one bullied them.

“Outside our neighborhood, it was very different. People would stare or ask questions. This makes you uncomfortable and sad when you are a child. You feel different, like you do not belong. You feel weird.”

The frequent separation from family was hard for Patricia. 

“Our childhood was pretty much about living in two worlds—the one we had in the ���ϸ����� Republic and the one we had at Boston Children’s Hospital. There were many times where we missed major events – family events, birthdays, holidays,” she recalls. “That’s when I first really felt social isolation.”

However, her parents were adamant that despite the disruptions, education would remain a priority. 

“My parents made sure that we never fell behind in education. They kept us up to date with our studies. Our longer trips to Boston were during the summer so that we did not miss school. Other times, we always took homework with us, and we had tutors to help us not fall behind.”

When he was 11, Harold had an emergency tracheotomy and lost his voice. He had to learn how to communicate in new ways, and Patricia and her family had to learn how to communicate with him.

“We learned to read Harold’s lips to figure out what he was saying,” she recalls. “He never went silent because we all learned to communicate by reading his lips.” 

It was around this time that the family was offered the opportunity for Harold and Patricia to participate in a BioMarin Pharmaceuticals clinical trial for MPS VI families being held in Oakland, California. 

“My parents took a leap of faith and decided to participate in the trial,” Patricia recalls. “There was a lot of uncertainty at that time. Moving was expensive, but the doctors believed we were perfect for the clinical trial.”

Community made the move easier.

“It was 2003 and we were living in a hotel in California with six other families for six months. Even though it was not fun to go to the hospital and have an IV in for eight hours a day, the fun thing was we were able to see other families and other kids with the same condition. Until this trial, we had never met other kids with MPS VI – with exactly the same condition as us, who understood the challenges of living with a rare disease.” 

One of the families they met lived in Napa. At age 28 their son, Brian Daugherty, was the oldest patient in the clinical trial.

“Brian was actually the oldest person with MPS we had ever met. He had graduated from high school, and he was working. It was so cool to see him living a normal life. When we met Brian and saw that he had a normal life – with some limitations – and that was amazing. When we met Brian and the other kids, it was as if we had finally found our tribe.”

Once the clinical trial was over, Patricia’s family was invited by Brian’s family to stay with them in Napa. Brian’s family did not speak Spanish, and Patricia’s family spoke very little English. But the language barriers did not prevent the families from developing a strong and supportive connection. They lived together for two years. Then, Patricia’s dad and brother Jose joined the family in Napa. Together again, Patricia’s family moved into a house in the same neighborhood as Brian’s family.

While happy to finally be back together, it was a challenging time for all. Patricia started middle school while Harold and Jose enrolled at the local high school. For Patricia, communication with her classmates and teachers was particularly challenging as she had lost her hearing and did not speak English.

 “If I wanted anything, I’d point to it. If I wanted water, I’d point to a bottle of water,” she says. “This really added to my social isolation.”

Once she was fitted with hearing aids, Patricia set about learning English. She advanced quickly, enrolling at Napa High School at age 14, happy to be joining Harold.

“High school was high school,” she recalls. “I was really shy growing up, and I did not really make friends easily. It was easy growing up with my cousins as friends, so I had no reason to make friends outside of my family group until I came to California.”

She did make one good friend while in high school – and they remain close to this day. Patricia also discovered new interests and strengths – including English, history, and psychology. She joined the dance club and choir. She also joined the Best Buddies club, working for two years as a TA for the program’s director. 

In January 2009, Patricia’s senior year, Harold passed away. His sudden death left her devastated.

“Harold had already finished high school, but he had not yet graduated. We were going to graduate the same year, but he finished high school in fall 2008.

“That last semester of high school was pretty hard. I was depressed. I missed Harold – he was not in school with me anymore and he was not at home anymore. I did not know what I would do – and I did not want to go back to school. But I did know that I needed to finish for him and for me.”

Patricia returned to school – and truly pushed herself to make it to the finish line. She graduated in 2009 and, when walking across the stage, accepted both her and Harold’s diplomas.

 After high school Patricia enrolled at Napa Valley College. She took general classes, not really knowing what she wanted to do. Perhaps rekindle an earlier interest in fashion design. Perhaps study psychology. Nothing really felt right.

“After Harold died, I realized that I wanted to do something to help people with disabilities, but I was not sure what that was. I was really lost after my brother passed, and I was alone again.” 

It was then that Patricia’s extended community – this time the medical community – put into motion a series of events that would help shape Patricia’s future. 

“After Harold passed, I was asked by the pharmacological company to speak to their new hires along with Brian’s mom. They wanted people to hear the patient’s perspective of the clinical trials.”

She made one presentation and then another – even joining one of her doctors during a presentation to nursing students at ���ϸ����� University. With each presentation, her confidence grew. 

“I started to say yes to everything. The more presentations I did, the more I liked it. I discovered that I really wanted to tell my story and that I enjoyed helping the medical community understand the challenges of families that participate in clinical trials and live with a rare disease.”

These positive experiences inspired Patricia to organize a family picnic day for MPS families living in the Bay Area.

“We were so used to seeing each other at the hospital or at a conference, but we had no time to actually socialize. I wanted to create a day that everyone could come together, spend time together, and just be.”

The first family picnic was a huge success. About 50 people attended, and everyone was excited about repeating the event the following year. The picnic became an annual event. 

“It became a really fun event for families to come together and for new families to meet each other outside a hospital setting where you are scared for your kid or scared about what you might hear from the doctors. I wanted to create a day that families could see that, regardless of their condition, we could live normal lives.

“I also wanted the doctors and nurses to connect with families outside of the hospital. The more I gave presentations and the more I hosted the family picnic, I thought ‘OK, maybe there’s something here that I can build on.’”

In 2015, Patricia graduated from Napa Valley College. She had enough credits to graduate with an associate’s degree in natural sciences and mathematics, but she still did not know what she wanted to do next. Without the regular structure of school, Patricia started to face anxiety issues and panic attacks. She started to feel alone and depressed.

“After Napa Valley College, I found myself not doing anything and not having a purpose. My body and mind just went crazy.”

Patricia took a year off from further schooling in order to focus on herself and her health while figuring out what was next. That’s when ���ϸ����� came across her radar.

“I remembered that when my doctor and I presented at ���ϸ����� to the nursing students, I had really loved the campus. I mean, I fell in love with the campus! So, I decided to look closer. I saw that ���ϸ����� had small classes, which I liked. But I was worried that it was a private school – that sounded expensive –  and a little too far away for me. I didn’t think I could afford a private school, and I really did not want to go that far outside of Napa.”

So, instead, Patricia tried to enroll at Sonoma State University. Her experiences at the larger school did not work out. The fit was wrong.

During her year off, and thanks to Brian’s mom, Patricia found a volunteer role at the Napa Police Department working in the records department. She also continued with her presentations, growing more confident each time.

“I was telling my story and helping others. In 2018 I went to Washington, DC to advocate on Capitol Hill for Rare Disease Week the last week of February with a group from the National MPS Society. I thought to myself, ‘I really like this, meeting with Congress people and advocating for people with disabilities and rare diseases.’ The more I thought about it, the more I realized how much I liked writing and talking – communications became my thing.”

���ϸ����� remained in her mind, so Patricia signed up for a campus tour and did her homework. She read up on the communications department courses and liked what she saw. She enjoyed her campus visit – it was personal, individual, and exactly what she was looking for.

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“I talked to my mom – she’s my full-time caregiver – and said ‘what do you think, can we drive to San Rafael?’”

Mom said yes, encouraging her daughter to apply to ���ϸ����� – to just go for it and see what happened. Patricia applied as a transfer student and, thanks to a scholarship from ���ϸ����� and some flexibility in scheduling, realized that her college dream