Blog

Meet Our Warrior: Sara

“My name is Sara Giannelli.  I am one out of 9 children and I have Sickle Beta Thalassemia.  While it isn’t Sickle Cell Anemia it is a variant of SS.  Living with Sickle Beta Thalassemia has had its ups and downs but I’ve never let it stop me from doing anything.  I know most people would be upset about having a disease that is always affecting their life but I don’t se it that way.  I see it as a part of me that brings out the strength of God through me.  It’s something that I battle and in these battles come testimonies.  Testimonies that I can share to motivate others like me or others who face battles in life.img_0167

At the beginning of this year, I had a sickle cell crisis so bad that I needed to go to the ER.  That same day, I was also supposed to work a junior tennis tournament 2 hours away in Columbia, SC.  As I was laying in the ER, I considered calling and telling them I couldn’t work but there was this little voice that was telling me to push through and not back down.  So I got up, packed my bags and left for Columbia.  It was pretty cold in Columbia at that time but I felt that God was going to get me through the weekend.  He did.  I am now 20 years old and I’ve had several episodes.  I am thankful for how God and my family have been with me through these years and many to come.”   ~ Sara

It’s A Family Affair

I’ve asked each of our immediate family to share their own words about how Braden having sickle cell disease impacts them.  Here are thoughts from one of his big sisters…..

 

I love these pictures of me and my baby brother. These are hands down my favorites for many reasons. When I left for college I missed out on a lot of things that you can’t see through a phone call. One of those things was my brother Braden. These pictures were actually the weekend of my grandfather’s funeral. And the first time we’d gotten to truly bond in years. In these pictures and that weekend he was a normal, carefree, CRAZY 😂, kid. It wasn’t until I actually moved back 2 years later that I saw the reality of his situation. Yes there were TONS of moments like these. But I’d never actually seen him in a real moment of sickness. And the first time I did it scared me. I still remember that unshakeable, feeling of helplessness. THIS is what families of children with Sickle Cell disease deal with every day. Fear, worry, sadness, helplessness, EVERY DAY. THIS is why my parents started The B Strong Group. THIS is why we share as much information and events as we possibly can. We want these families to know that we understand their struggles. We understand their emotions. No family should have to go through this alone. #SickleCellAwarenessMonth #TheBStrongGroup

-Ebonii (2018)

Summer Time & Sickle Cell Disease

Summer time is when the kids are out of school, their schedules are less structured, wake up times and bedtimes may be a little later but to the person with sickle cell disease there are additional things to keep in mind.

Summer time brings hotter temperatures (especially in the South).  Those with sickle cell disease must be careful to not be in extreme heat conditions as this can cause complications including pain crises due to sickling.

Stay Hydrated.

People with SCD are at a higher risk of dehydration especially during the summer.  Drink water and consider carrying a water bottle with you!  Try to drink at least 10 cups of water and perhaps even more if you are planning to be extra active.

Swimming Pools.

Swimming pools during the summer time can be so much fun but never swim in cold water.  Extreme temperature change can trigger sickling and cause a pain crisis.  Dry off immediately after leaving a pool.

Stay Cool.

Please be aware of the outside temperature.  Also, be cautious of going from the heat outside to air conditioning inside.  That can trigger a pain crisis as well.  Have a blanket or jacket available to regulate your body temperature.

Eat Healthy.

Be sure to eat foods that will help your body.  Consider foods that contribute to hydration such as watermelon, broccoli, grapefruit and tomatoes.  This can help supplement the fluids your body needs.

Have Fun.

I know there’s so much to consider when you are managing a chronic disease but try to relax and have fun.  Do things that make you happy. Remember that you are so strong and resilient and that you inspire so many people!braden on butler beach

Spreading Awareness

We were invited to share our story at an American Red Cross Blood Mobile presentation.  Generous donors funded a bloodmobile for our local Red Cross office.  We were happy to represent The B Strong Group and share our story to let the donors see who their generous donation impacts.  We were able to meet the donors and thank them in person.  We shared our sickle cell story and told the about our organization and the things we want to do.  bloodmobile talkWe want to support those with sickle cell disease and the other organizations that provide support for those with sickle cell disease.  We are determined to promote the importance of blood donation to those with sickle cell disease.  We especially want to encourage African Americans to donate blood because a lot of sickle cell patients need our type of blood, as well.  Blood donation will always be a priority to The B Strong Group because a blood transfusion helped to save our son’s life.  We will never stop advocating.

A look inside the new blood mobile that was donated to the Columbia Red Cross office.