Building Trust: Learning to Manage Sickle Cell Disease Together

Now an adult, Vincent was born with sickle cell disease. This inherited blood disorder causes red blood cells to become hard, sticky, and shaped like a banana (sickle-shaped). These cells can block blood flow, causing pain and other serious health problems.

Growing up, Vincent experienced many challenges related to sickle cell disease. But he never wanted the disease to define him. He worked hard to do things on his own and rarely asked for help. Even when he knew the risks, he often pushed himself.

At times, he had pain that lasted hours and sometimes even days. These episodes made it hard to move, work, or manage everyday tasks. Vincent managed some pain episodes at home. Others required emergency medical care.

Vincent knew how to manage his disease, but he did not always put his health first. He was used to handling these challenges alone.

Then he met Stephanie.

Building trust together

Vincent’s first date with Stephanie was the beginning of something special. They enjoyed sharing their interests and learning about what mattered most to each other.

As Vincent got to know Stephanie, he saw how much she cared about others. Their growing relationship gave him the confidence to share something he had kept from many people.

"I really don't tell everyone that I have sickle cell disease," Vincent says. "I don't explain it because I don't want anyone to treat me differently."

When Vincent told Stephanie about his sickle cell disease, he learned that his diagnosis did not change her feelings for him.

"I loved the person he was," Stephanie says, "so it wasn't going to change my mind."

Stephanie began learning about sickle cell disease and recognizing when Vincent might need help.

Over time, she became his accountability partner, helping him manage his health while respecting his choices.

She reminds him to rest when he does too much, checks his pain levels, and helps him decide when to seek medical care. 

Learning to live more fully

Before meeting Stephanie, Vincent often measured success by how much he could do.

"I did 10,000 things when I should have only done 5," he says.

Vincent began to think about what he wanted his life to look like in 20 years.

With Stephanie's support, Vincent focused more on his long-term health and the experiences he wanted to enjoy. She encourages him to slow down and rest. 

Together, they have learned to balance managing sickle cell disease with enjoying life.

Now married, they love to travel, explore new places, and spend time together. Vincent hopes to visit other countries, go hiking, and make memories with Stephanie for years to come.

Finding strength in others

Vincent and Stephanie’s experience shows how having someone you trust can help when you live with a serious health condition. Someone you trust can help you remember your health goals, recognize when you need help, and speak up when you cannot speak for yourself.

That person does not have to be a spouse or romantic partner. It can be a family member, a close friend, or someone who has faced similar health challenges.

What matters most is trust.

Find someone who listens, respects your choices, and makes you feel safe sharing your concerns. Talk about your health needs and how others can help. Share important information, such as your medicines, your care team's contact information, and what to do in an emergency.

Today, Vincent shares his experiences with young people who have sickle cell disease. He helps them prepare to manage their health as they become adults. Stephanie serves as vice chair of a group that brings together people with sickle cell disease to raise awareness and support research.

Both encourage others to build a trusted support network before help is needed.

"It's always good to have that handful of individuals that you know can advocate for you," Vincent says.

Stephanie also encourages people to identify those they trust and make sure they know how to help during an emergency.

"Start the community before you get sick," she says.

Vincent and Stephanie know that life with sickle cell disease brings challenges. But they also know they can face those challenges together. What began with a chance meeting at a grocery store has grown into a life built on love, trust, and caring for each other. They know they can count on each other through the hard days and the joyful ones still to come.