Amy Cohen of Lynn will be running in the New York Road Runners New York City Marathon. She's running as a member of "Team Inspire" because of her extraordinary story. Cohen has sickle cell disease, a diagnosis that typically means a lifetime without exercise and a stigma she hopes to end.

As Cohen stretches and runs, her sickle cell is invisible, but intensely painful symptoms are just under the surface. Because of chronic episodes of intense muscle pain called a "crisis," patients are told from childhood not to exert themselves.

What is sickle cell disease? 

Sickle cell disease is a rare genetic blood disorder found predominantly in people of African descent.

"My parents are from West Africa," Cohen said. "So their perception of sickle cell is like, 'Oh the kids like, couldn't even go to P.E. growing up.' So they're very cautious."

A problem with the protein that helps carry oxygen in red blood cells turns cell shapes which should be normal donut shapes into crescent or sickle shapes. They stick to the walls of blood vessels and cause a deprivation of oxygen to organs and tissues.

Only 100,000 Americans live with sickle cell. The pain is excruciating.

"People have described it to me as everything from the sensation that their bones are breaking from the inside to the feeling of hot pokers being run through my body to the sensation of broken glass being poured through my veins. Witnessing sickle cell crises is absolutely awful," Dr. Sharl Azar, a hematologist at the Mass General Hospital Sickle Cell Disease Treatment Center, said.

"A hero to her community"

When Cohen moved to Lynn from Houston, Texas, she sought out Azar. The 27-year-old said the transition from pediatric to adult care had been difficult.

"Up until maybe about 20 years ago, there was no need for me as an adult hematologist to even exist because most patients died in childhood," Azar said.

But he has guided Cohen beyond what he calls "old thinking" about the disease and says research shows that patients can engage in physical activity with proper guidance and hydration.

Azar was there to hug Cohen as she crossed the finish line at the B.A.A. half marathon last spring.

"She is a hero to her community, because other sickle cell warriors seeing Amy cross that finish line or knowing that someone like Amy crossed that finish line can finally be able to say that I can do something like that too," Azar said.

Cohen becomes teary-eyed and emotional when she talks about Dr. Azar.

"He is honestly the best doctor I've ever had. Like honestly, he is. And just the level of intention that he has for us in care, it means so much," Cohen said.

This disease carries another painful reality – a history of discriminatory care.

"I've had some horrible experiences with providers, like that said like 'Oh you're lying.' Like I'm coming to the ER and they're like 'You don't have sickle cell you're just here to like get drugs,'" Cohen said. "So, it's really gratifying that like someone a group of people see us, and they treat us like people because basic empathy is lost with this disease."

Running the New York City Marathon

Dr. Azar and Cohen's Mass General Hospital trainer Jen Miramontes encouraged her to accomplish her childhood dream - running the New York City Marathon.

"It's so funny," Cohen said. "I hate running. So thankfully Jen did create a training plan for me"

Miramontes said she what Cohen is doing for the community is remarkable. They believe Cohen is the first Sickle Cell patient to ever run a marathon. Miramontes will be there running by her side.

"I'm excited to represent the sickle cell community, not only like in Boston but all over the world just to show that like I can do this, and you can too. I don't want to be the only person who does this," Cohen said.