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

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

Why Are You Smiling?

Not too long ago, my son and I participated in a fundraiser for our local children’s hospital.  We arrived for our portion of the event a little early and proceeded to check in to let the organizers know that we were there.  I recalled greeting several people with a smile on our way to the check in table.    Later on when it was time to do our interview, we were introduced to the interviewee and he said, “I saw you earlier when you came in and you had this huge smile.  I had no idea that you were a mom of one of the miracle children we were going to interview.  Why are you smiling?”me and braden

I immediately processed the question.  I thought about how I was feeling at the time.  I thought about how well my son was feeling at the time.  We hadn’t had a hospital stay in a while and we were managing his illness very well.  I then proceeded to answer our interviewee, “God is good! Why not smile?”

Trust me, this journey is not all smiles and I’m human but when I think of all the goodness that God has granted us, I must smile.  It took me a while to get to this point.  The guilt, the constant worrying, the “woe is me”…..I had to learn to deal with it all.  It took time, prayer, sharing how I felt, listening to those who wanted to help me to get to this point of smiling.  When I catch myself sliding back into the gloom,  I check myself and my attitude, say “Thank you, Jesus” and I smile.

I smile because my God is good!

 

Proverbs 17:22 King James Version (KJV)

 A merry heart doeth good like a medicine: but a broken spirit drieth the bones.