Nadia Fulford was diagnosed with sickle cell disease very early in life, and she has spent all of her young life learning to live with it.
She had no choice, because there is no cure.
Even though she’s only 24, Nadia’s sickle cell disease makes her red blood cells stiff, twists them into a pointy sickle shape, and causes them to clump together to impede normal blood flow. The cells die early, leaving her short of healthy red blood cells.
Patients like Nadia suffer with infections, fatigue, and pain. They have a higher risk of stroke.
Treatments can help, but this is a disease that needs constant attention. When Nadia was a child, her mother would remind her to take the medications she needed, get her to the doctor for checkups, and bring her to Golisano Children’s Hospital for frequent stays.
Now Nadia is a mother to 4-year-old son, August. She’s taken charge of her life and her health.
It took her time to grow into this much responsibility. And it took courage: during her pregnancy, the illness caused blood clots to form around her lungs, putting her and her baby in danger. There were many trips in and out of the hospital. Not long after, when she was 21, Nadia’s pediatric hematologist, Craig A. Mullen, M.D., Ph.D., told her she would need to find an adult primary care practice. He recommended Tiffany Pulcino, M.D.,M.P.H. at the Complex Care Center.
“It was hard because I had been going to him since I was little,” Nadia said. “He knew me; he knew my illness. Now I have to go to this new place, this new doctor… what if she wasn’t as nice as Dr. Mullen?”
“It was scary going to see her for that first appointment. But she was there with open arms, and smiling, and she took time to get to know me before the ‘medical appointment’ part of it got started.”
Pulcino also noticed that Nadia was feeling discouraged and depressed, and put her in touch with a therapist for support. She also gave Nadia her phone number and invited her to call if she needed anything. She’s been Nadia’s doctor ever since.
One of their first goals: helping Nadia build skills to manage her own care — including the more than two dozen pills she must take every day. Nadia learned to set alarms on her phone to remind her to take medicines.
At first, Nadia would miss some doses. “When I got hospitalized more and more because I was dehydrated or not eating, I realized I needed the antibiotics and other medicines to keep me healthy.”
Now that she’s in a good place with preventive care, she’s also learned how to be her own advocate so she can continue to work part-time and raise her son.
“When people are sick, I have to be extra careful around them. I have to make sure that wherever I go, I have enough meds, water, ibuprofen, Tylenol. I keep a thermometer with me at all times. It’s a lot to deal with and live with.”
She likes that Pulcino doesn’t tell her what to do — instead, she asks Nadia what her life goals are, and together they come up with a plan to help her get there.
It’s clear that Nadia has learned to speak up for herself when dealing with doctors and the people in her life.
“I’m the one living with this sickness; I’m not a little kid anymore. I have a child of my own. This is my body, my health. I know what’s best for me.”
She’s also found confidence and has her eye on the future. She’s working in a restaurant, and making plans to go to cooking school.
“I’m really proud of myself. I have a son now, and I have to take care of myself if I want to watch August grow up. I still have this sickness — it’s my first ‘baby’ and it needs constant care. That’s how I look at it — I have to take care of the sickle cell ‘baby’ so I can be there for my real baby.”
The road from childhood to adulthood is not a fast or easy path for anyone, and especially not for someone with a lifelong illness. But Nadia has found her footing, and she’s on her way.