Seasons change four times a year and bring about warmer or cooler clothes and longer or shorter days.
For Tristan Lee, seasonal changes bring about pain crises that could send him to the emergency room.
Lee, of Williamsport, was diagnosed with sickle cell disease when he was 6 months old.
"For the first six months, doctors didn't know what it was," Lee said.
Eventually a local doctor discovered the disease, but "they still kind of don't really know what to do. They know to give me pain medicine and IV fluid," Lee said. "They don't know exactly what else they can do. Getting through to the ER when you're in that amount of pain and you have to wait ... can be more excruciating."
Sickle cell disease, which often is know as "the forgotten disease" or "the invisible disease," is a genetic red blood cell disorder in which the cells become hard, sticky and curved.
The cells die early, causing a constant shortage of red blood cells. When they travel through small blood vessels, they can get stuck and lessen blood flow, according to the South Central Pennsylvania Sickle Cell Council.
The chronic and incurable disease often brings many complications, some of which are seriously debilitating and life-threatening. Crisis pain is acknowledged by pain specialists to be some of the most severe pain experienced by humans.
Lee shared his story Sept. 22 at the Maple Street AME Zion Church, 600 Fifth Ave., after social worker Debra Bizzard spoke during an "Open Our Eyes to Sickle Cell Disease" event.
"I want to make the forgotten disease not so forgotten," she said.
Part of the reason Bizzard spoke in Williamsport is to find people in the area with the disease. She was told if she can find four more families associated with the disease, she can open an office in the area to provide support programs.
"I don't want this to be my last presentation in Williamsport," she said. "I want to come back again and again."
In the U.S., the disease affects primarily African-Americans. About 1 in 400 African-American newborns are born with it.
About 10 percent of African-Americans are carriers of the sickle cell trait.
"So many people aren't aware they have (the disease)," Bizzard said. "Even more don't realize they have the trait until they have a child with the disease. If a child is born with the disease, it's an inherited trait from the mother and father."
Some of the symptoms Lee said he has experienced include jaundiced eyes and swollen hands and feet.
Sleeping disorders and fatigue also are common symptoms, Bizzard said.
"They don't want anything touching them," she said. "Do not assume the child is putting on. They may have sickle cell."
She said she spoke not as a doctor but as a social worker trying to draw attention to the disease.
Muscular dystrophy affects just 25 percent of the people that sickle cell disease does, yet millions of dollars are raised every year to combat the former disease.
The unawareness comes from the public as well as medical professionals not knowing about the disease.
Bizzard spoke with a person who had the disease and was 28 years old. She was not diagnosed until she was 26.
"Continually misdiagnosed," Bizzard said. "That is a problem in the medical system."
She said she called Williamsport Regional Medical Center but they could not tell her if they tested for it. Instead, they advised her to call the state Department of Health, who said the closest tester is Geisinger Medical Center in Danville.
People who are in a lower socio-economic status might not have the transportation to drive to Geisinger.
What Bizzard wants to do, and has done in the past for other hospitals, is have training sessions for doctors so they can recognize the symptoms and know what to do if someone goes to the emergency room complaining of pain.
"You can have a child with sickle cell disease experience a stroke," Bizzard said.
She knows of a child who had a stroke first at the age of 7. By age 12, the child had had two more.
"It's important a person be tested," Bizzard said.
A common misconception about the disease is that it is a "black" disease, she said.
"That's not true," she said.
The disease and trait are common in many ethnic nationalities, including African, Arab, black, Caucasian, Greek, Indian, Italian and Latino, according to the council.
Latinos from the Caribbean, Central America and parts of South America are the second largest group affected.
Many people also believe that carrying the sickle cell trait would not affect the body because the person would not have pain crises.
"It was discovered in the last 10 years, and that's not true," Bizzard said. "At least 10 African-American men dropped over dead. What they all had in common is they had the trait. Their bodies were overexerted. They were severely dehydrated and they died. Even if you have the trait, you could still suffer some form of pain."
As time goes on, medicine is being discovered to offer some help, but there is no universal cure yet.
What Bizzard also wants addressed, in addition to increasing awareness, is the stigma associated with the disease.
"They don't like to talk about it," she said. "I have a client who has sickle cell disease that thinks if she doesn't talk about it, it doesn't exist."
Parents also harbor guilt if their children receive the disease from their traits.
"They believe they did this to their child," Bizzard said. "No. You're not God. Sickle cell disease is like inheriting high blood pressure."
While the average life span for people with the disease is 45 years, Bizzard has clients who are 78, 76 and 72.
"That tells you that the average lifespan is going up," she said. "It needs to get better."
For more information, visit scpascc.org.
