Summer can trigger painful Sickle cell disease crisis

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Sickle cell disease affects millions worldwide, including an estimated 100,000 people in the United States.

“The only thing that can stop this [sickle cell disease] and let us live to old age is having better treatment options and a wide portfolio of drugs available to us,” said Tosin Ola, a sickle cell sufferer who is a registered nurse and leading patient advocate at the largest online support groups, Sickle Cell Warriors.

Sickle cell disease is an inherited blood disorder that affects red blood cells, according to the Sickle Cell Disease Association of America. Sometimes, these red blood cells become sickle-shaped— or crescent-shaped— and have difficulty passing through small blood vessels.

When sickle-shaped cells block small blood vessels, less blood can reach that part of the body and tissue that does not receive a normal blood flow eventually becomes damaged.

While medical experts are still searching for a cure, those with the illness have said the heat of the summer months— and activities related to the season— also can trigger even more of the pain they experience from the disease.

“During the summer, there are a lot more to stressors on people living with sickle cell disease. The first is the obvious— the heat and dehydration that the season brings,” Ola said. “Secondly, the summer is a time when many families go on vacation. Air travel can be a significant trigger for people living with this condition. Even something as simple as swimming in the pool, lake or ocean can trigger a painful crisis episode.”

Ola says the greatest challenge for people living with sickle cell disease is adapting to the episodes of pain.

“My advice is to learn to live a life of balance. Know what triggers crisis in order to avoid these situations as best as possible, or make plans around them,” Ola said.

However, summer can still be enjoyable for sickle cell disease sufferers.

Officials from the Sickle Cell Disease Association of America say they support a wide range of innovative research programs to discover and develop new and effective therapies for sickle cell disease.

By harnessing the best minds in science and medicine, the association has made tremendous progress in understanding and treating the disease, and continues to pursue every opportunity that could help people with sickle cell live longer and healthier lives, according to officials from the Sickle Cell Disease Association.

Abby Roth, a nurse clinician who cares for patients with the illness, says there are precautions that can help when the weather is hot. Staying hydrated, cool, going for a swim, and eating healthy and balanced meals are among the practices Roth advocates.

In a web post, Roth noted that drinking fluids such as water or Gatorade and carrying a bottle of water at all times should be considered.

She pointed out that a sudden change in body temperature can cause a child with sickle cell to have an acute pain episode. It is recommended that children with sickle cell should avoid becoming over-heated during the summer and children should dress in light layers to better accommodate for temperature changes. It is essential to wear a hat and sunscreen when outdoors. Roth also encourages peer relationships.

“Children with sickle cell may feel alone in their disease or have a difficult time meeting friends due to multiple hospital stays,” she said. “Camp is a great way for children to learn social skills and increase self-confidence.

Children with sickle cell should be encouraged to attend camp. If your child is going to attend a camp or retreat, contact your sickle cell team to get a health form that includes your child’s medications. This form will help the camp instructors know how to care for your child when they are away from home.”

Ola added that counteracting the pain caused by the disease begins with eating as healthy as possible.

“Having diet rich in root vegetables such as sweet potatoes, beets, carrots, leafy dark green vegetables like kale, spinach,” she said. “Eating well improves your health, and drink as much water as possible,” she said.

For more information about sickle cell disease, summer triggers and more, visit: www.sicklecellwarriors.com or www.sicklecelldisease.org.