“The hardest thing is knowing your life isn’t like everyone else’s and people can’t relate to your pain.” – Gwen Scott, 21
To look at her, you would never know Gwen Scott has a health problem. But this vibrant actor, artist, and activist carries a hidden burden: sickle cell anemia, a chronic congenital disease in which abnormal blood cells do not allow oxygen delivery and can clot small blood vessels, causing excruciating and debilitating pain.
Gwen aged out of pediatrics when she turned 20 and was worried about making the leap to adult primary care, but her concerns faded quickly when she met Dr. Tiffany Pulcino, who provides expert management of Gwen’s condition, constant support, and most of all, understanding.
With Dr. Pulcino and the new Complex Care Center, Gwen will have the ongoing medical management she needs, and much more: caregivers who not only recognize the challenges of her disease, but also see the full measure of her as a person: “I have trouble talking to people about my illness, but Dr. Pulcino listens – she makes the visits about me, and how I want to live.”
“I never liked telling people my story, but now I do because it has a happy ending.” – Stephanie Ramos, 26
Stephanie Ramos has been fighting sickle cell anemia – and the considerable odds against her – all her life. She never saw herself as lucky until 2015, when she became the first adult sickle cell patient in Rochester to be cured of the disease in over a decade.
Stephanie’s twin brother donated the bone marrow that saved her from sickle cell disease and the damage it caused: avascular necrosis in her hips and ankles, then joint replacement surgery after it destroyed her hip bone. She endured full-body blood exchanges to replace defective cells with healthy ones. “I said, ‘I can’t fight anymore. If I die, I die,’ ” Stephanie remembers. Her doctor encouraged her to take one more step toward her cure.
“It has been a journey, for sure,” Stephanie says, but for once, the road ahead looks clear. Stephanie wants to pursue a medical profession because she knows her experiences can help others, and she’s got an important story to tell. “I want everyone to know about my disease. And I want more people to be bone marrow donors.”
“I feel like I hold a place in my doctor’s heart, the way she holds a place in mine.” – Yolanda Copeland, 25
Yolanda Copeland learned she had Type I diabetes when she was 15, and for a while, her condition was under control. But by 2011, she started having serious complications, including gastroparesis, an inability of the stomach to process food. Yolanda needed to wear a J tube that passed liquid nutrition directly into her small intestine, and spent a year in the hospital. She was stressed about her health, her inability to care for her young son the way she wanted to, and her transition from pediatric to adult primary care. She was reassured that her new physician, Dr. Tiffany Pulcino, is trained in both internal medicine and pediatrics.
Yolanda also appreciates the way Dr. Pulcino helps her manage her own health: “When I talk to her, she asks me what I want to do, and helps me get there.”
Yolanda’s newfound strength helped her handle ongoing health challenges, a second pregnancy, and her younger son’s developmental disabilities. Yolanda sees her doctor as the best kind of coach, and herself as an athlete who can go the distance. “Dr. Pulcino and I work together on everything. She’s ‘Team Yolanda’ and I’m all for that!”
“I feel truly blessed that we have a doctor who knows my sons and what they need.” – Margy Mattison, mother of Tyler, 21, and Josh, 19
Tyler and Josh Mattison were born 22 months apart with the same rare neurodevelopmental disorder: MECP2 Duplication Syndrome, whose symptoms can include recurrent respiratory infections, speech issues, seizures, and progressive muscle stiffness and muscle spasms.
Both Tyler and Josh have had frequent hospitalizations for serious conditions, including cardiac issues and pneumonia. The complexity of their sons’ health problems has made the transition from pediatric to adult primary care especially challenging for the Mattison family. They are grateful for the Complex Care Center, which will offer specialized outpatient care to help keep patients out of the hospital.
When hospitalization is needed, the Complex Care Center’s Inpatient Consult Provider will divide clinical time between the center and UR Medicine-affiliated hospitals to collaborate with hospital providers on inpatient care and ensure a smooth transition home when a patient is discharged. That will make hospitalizations easier for families like the Mattisons. Margy already feels the burden of worry is a little lighter: “It is huge to know someone is there and on our side.”
“You really feel like you have an advocate when you’re a patient here.” – Christian Johnson, 43
Christian Johnson was struck by a car at age 13 while riding his bicycle home from school. He received pediatric specialty care for the medical issues that accompany spinal cord injury and for many years, his health seemed stable. But during graduate school at Notre Dame, the chronic pain and other conditions Christian had since the accident were worse and new, inexplicable problems began: dizziness, difficulty eating, tremors.
Though Christian qualified for clinic visits as a grad student, there was no access to the kind of care he needed as an adult. He returned to Rochester and was referred to Dr. Tiffany Pulcino in 2009.
After years of unaddressed health issues, Christian says, “I was in terrible shape. I remember before the appointment, being really worried about what I would do if the doctor wasn’t responsive to my needs.” At that first meeting, he found a physician who gave him the attention and time his symptoms required. At the Complex Care Center, physicians and care managers will have a smaller number of patients than most primary care practices, giving them more time to discuss complex medical issues with patients, develop care plans, and follow up to ensure patients have the resources they need.
Though Christian’s medical issues have not entirely resolved, consistent access to the right kind of care has greatly improved his health and his outlook. “I’ve tried to get family members and friends to see my doctor,” Christian says. “This is the kind of care I want people I care about to have.”
“It will be wonderful to have medical and dental care under one roof.” – Maureen O’Brien Chepiga, sister of Margaret O’Brien, 50
Margaret O’Brien was born with developmental disabilities and has been cared for by family all her life – first her parents in Oswego, and now her sister Maureen and brother-in-law Steve Chepiga in Rochester.
Margaret has difficulty speaking but loves singing. Though she has several health issues, her dental problems have been the hardest for the family to address over the years. That’s because there’s a shortage of dentists trained to care for patients with developmental disabilities, who may be anxious in a dentist’s office or have trouble communicating with their provider.
Eastman Institute for Oral Health is a vital part of the Complex Care Center, where patients will benefit from receiving primary care and oral health care in one setting. And it will be a highly valued training site for the next generation of oral health specialists.
Eastman Institute faculty will pass on their expertise in caring for patients with complex needs, and their tradition of compassionate care. Margaret had dental problems that required tooth extractions, but her provider, Andrea Pedersen, RDH, immediately won Margaret’s trust at her first appointment – by singing a song with her.