Have you ever heard of sickle cell disease? Maybe you or someone you know has it. Sickle cell disease can be tough, but it doesn’t have to hold you back from living a full and happy life. This article is your guide to understanding life with sickle cell disease, discovering the amazing community you’re a part of, and learning about exciting new treatments on the horizon.

What is Sickle Cell? : Understanding the Tiny Mail Carriers

Imagine millions of tiny red blood cells, like little mail carriers, rushing through your body to deliver oxygen. They travel in single file through your blood vessels, dropping off oxygen to all your parts, keeping you energized and healthy. In sickle cell disease, these red blood cells are not able to do their job properly. Instead of being nice and round, they turn into a funny “C” shape, like a sickle!

These sickled cells are very different. They’re too stiff and sticky, and they get stuck in your blood vessels, causing blockages. This is called a pain crisis, and it can feel like a really bad cramp. It can happen anywhere in your body – your belly, your chest, even your bones! Pain crises can be scary and uncomfortable, but there are ways to manage life with sickle cell.

But what causes these red blood cells to change shape? It all boils down to a tiny mistake in your genes, the instructions that tell your body how to build things. In sickle cell disease, there’s a flaw in the instructions for making hemoglobin, the protein inside red blood cells that carries oxygen. This typo makes the red blood cells weak and prone to sickling.

Sickle Cell 101 : Taking Charge of Your Health

Life with sickle cell disease goes beyond just taking medications. Here’s how you can take charge of your health and feel your best:

• Hydration Hero: Drinking plenty of water throughout the day is crucial. Think of it like keeping the delivery truck’s engine running smoothly! Water helps your blood flow easily and prevents dehydration, which can trigger pain crises. Aim for eight glasses a day, but adjust based on your activity level and climate. When playing sports or playing outside with friends make sure to take water with you.
  
• Fuel Your Body: Eating healthy foods gives your body the energy it needs to stay strong. Fill your plate with colorful fruits and vegetables, whole grains like brown rice or whole-wheat bread, and lean protein sources like chicken or fish. Don’t forget healthy fats like those found in avocados or nuts for lasting energy. Below are a list of foods that you might want to add to your diet that have been recommended by Nemours Children’s Hospital:
  
  • Peanuts
  • Avocado
  • Spinach 
  • Whole milk
  • Fresh fruits like strawberries and apples
  • Rice
  • Yogurt
  • Fish 
  • Beans

• Move Your Body: Regular exercise can help manage pain, improve your mood, and boost your overall health. Find activities you enjoy, like swimming, dancing, or tennis. Staying active is important, but remember that extraneous exercise can cause a pain crisis so make sure you ask your doctor or proceed with caution. 
  
• Medication is key: Taking your medication consistently is very important. Though you may feel okay, there are things you can not see happening inside your body. Medication for sickle cell is important because it helps prevent your cells from sickling. 

Life with Sickle Cell Doesn’t Define You: You Are So Much More!

Maybe you sometimes feel different because of sickle cell. That’s okay! It’s a part of you, but it doesn’t have to be all of you. You are so much more than your disease. Think about all the things that make you, YOU!  Are you a great artist? A super athlete? A hilarious jokester? A whiz at science experiments? Focus on those awesome things and keep shining your light!

Life with sickle cell can also make you super strong. You deal with challenges every day, and that takes guts! Think of yourself like a superhero with a special sickle cell power – the power of resilience! You’ve learned to navigate pain crises, manage medications, and stay positive. These are all superpowers that make you unique and strong.

Here’s a secret: everyone has challenges, even people who don’t have sickle cell. Maybe they struggle with shyness, have trouble learning a subject in school, or deal with family issues. The important thing is to focus on your strengths and find ways to live life with sickle cell and overcome your challenges.

Sickle Cell Testimonial : 

“The publisher of this article has sickle cell! Yes, I wrote this specifically for you. Hi, my name is Naomi Bethel, I am 24 years old and a proud sickle cell warrior!  Growing up, life with sickle cell was not easy, but I have been able to overcome so many obstacles. We are always told what we can and can not do. There is nothing we can’t do!

I remember growing up I wasn’t allowed in the ocean for more than 10 minutes, so my family gave me a wetsuit so I could stay in longer. Yes, the kind you see surfer dudes wearing! I was not allowed to do track and field, so I chose dance instead. I spent 13 years of my life doing ballet, jazz, tap, modern, and point. I loved every second of it!

It’s not about the obstacle that stands in your way, but how you overcome it. Yes, there are bad days, but stay positive, surround yourself with supportive people, and JUST LIVE! I hid sickle cell from a lot of people when I was younger, I was embarrassed and thought it was a weakness. In actuality, it gives me strength. We are warriors who shine greater than most. I have cried many nights thinking of the worst. After hundreds of hospital stays, a blood transfusion, and all the mental exhaustion from it, I am still excited to take one day at a time. I’m excited to complete my master’s in digital marketing, fly across the world, spend time with family, and live the life I know I can have.” 

-Naomi Bethel

Parent Perspective: 

“You always hope when you get married that everything will be perfect.  When I realized my first child was diagnosed with Sickle Disease,  I fell to my knees and cried for days.  Not knowing all that my newborn would have to go through, I had to get it together for my child’s sake.  Making sure I did my homework and learned as much as I could about the disease was my top priority.

Realizing I had to follow strict guidelines to ensure my child’s health and well-being.  It was hard! I relied on doctors, my family, and friends for support.  God gave me my child and I love her so much. It was all worth the sacrifice!  She is older and able to take care of herself now, but I will always worry not just as a mom, but as a mother of a child who has sickle cell.”

-Rhonda Bethel

Sickle Cell Community: You’ve Got This!

Remember, you’re not on this journey alone. There’s a whole community of people out there who understand exactly what you’re going through. These are your sickle cell warriors! They can be friends, family members, or even people you meet online who share your experiences.

Talking to others with sickle cell can be a huge help. You can share tips on managing pain, celebrate victories together, and vent about frustrations. Sometimes, just knowing someone gets it can be a relief. There are also support groups where you can connect with other warriors and feel the power of community. These groups can be online or in person, depending on what works best for you.

Here are some ways to find your sickle cell community:

• Talk to your doctor- They might know of local support groups or online resources.
• Search online-  Look for websites and forums dedicated to sickle cell disease.
• Social media- There are many social media groups for people with sickle cell and their families. Sharing your life with sickle cell disease can be so inspirational!

Don’t be afraid to reach out! The sickle cell community is a welcoming and supportive place.

@sicklecell101

A Ray of Hope: Gene Therapy for Sickle Cell Disease

Imagine a future where life with sickle cell is no longer a problem! That future might be closer than you think. Scientists are working on something called gene therapy or CRISPR, which is a way to fix a typo in your DNA. 

Gene therapy for sickle cell disease is still being studied, but it has the potential to be a game-changer. Here’s how it might work:

1. Doctors take some of your stem cells, the master cells that can turn into many different types of blood cells.
2. Using a special vector (like a tiny mail carrier), they deliver healthy genes into the stem cells. These genes can come from a healthy donor or may be corrected versions of your own genes.
3. The corrected stem cells are then put back into your body, where they start making healthy red blood cells that don’t sickle.

Gene therapy is a complex procedure, and there are still some challenges to overcome. But the potential benefits are huge. Right now there are two medications that have recently been approved and they are calling it the cure for sickle cell! Ask your doctor for more information.