Archive for the ‘Sickle Cell’ Category

Living well with Sickle Cell Disease

Posted: April 12, 2015 by 941kishasc in Health, Sickle Cell

People living with sickle cell disease can live full lives and enjoy most activities that others do.  Below are some tips to help you or someone you know with sickle cell stay healthy:

  • Find good medical care – Sickle cell is a complex disease.  It’s best to visit a hematologist (a doctor who specializes in blood diseases) for care.  They know a lot about the disease and this would prevent any serious problems later on.
  • Get regular checkups – Get regular checkups with a primary doctor.
    • Newborns to age 1 should get checkups every 2 to 3 months.
    • Children ages 1 to 2 should get checkups at least every 3 months.
    • Children and adults ages 2 and up should get a checkup at least once a year.
  • Prevent infections – Such illnesses, like the flu, can become dangerous to a child with sickle cell.  You can help keep them safe by getting them the flu shot and making sure that they always wash their hands.
  • Learn healthy habits – People living with sickle cell disease should drink at least 8 to 10 glasses of water a day.  Children can participate in physical activity to stay healthy.  It’s important that they also drink plenty of water, rest when tired and don’t over do it.
  • Get support – Find local support groups that can provide information, assistance and support.

A Few Signs and Symptoms of Sickle Cell

Posted: April 11, 2015 by 941sheriesc in Health, Sickle Cell

Signs and symptoms of sickle cell anemia often don’t appear until an infant is at least 4 months old and may include:

  • Anemia. Sickle cells are fragile. They break apart easily and die, leaving you without a good supply of red blood cells. Red blood cells usually live for about 120 days before they die and need to be replaced. But sickle cells die after an average of less than 20 days. This results in a lasting shortage of red blood cells (anemia). Without enough red blood cells in circulation, your body can’t get the oxygen it needs to feel energized. That’s why anemia causes fatigue.
  • Episodes of pain. Periodic episodes of pain, called crises, are a major symptom of sickle cell anemia. Pain develops when sickle-shaped red blood cells block blood flow through tiny blood vessels to your chest, abdomen and joints. Pain can also occur in your bones. The pain may vary in intensity and can last for a few hours to a few weeks. Some people experience only a few episodes of pain. Others experience a dozen or more crises a year. If a crisis is severe enough, you may need to be hospitalized.
  • Hand-foot syndrome. Swollen hands and feet may be the first signs of sickle cell anemia in babies. The swelling is caused by sickle-shaped red blood cells blocking blood flow out of their hands and feet.
  • Frequent infections. Sickle cells can damage your spleen, an organ that fights infection. This may make you more vulnerable to infections. Doctors commonly give infants and children with sickle cell anemia vaccinations and antibiotics to prevent potentially life-threatening infections, such as pneumonia.
  • Delayed growth. Red blood cells provide your body with the oxygen and nutrients you need for growth. A shortage of healthy red blood cells can slow growth in infants and children and delay puberty in teenagers.
  • Vision problems. Some people with sickle cell anemia experience vision problems. Tiny blood vessels that supply your eyes may become plugged with sickle cells. This can damage the retina — the portion of the eye that processes visual images.

Sickle Cell Support Group

Posted: April 11, 2015 by sicklecellunite in Children, Events, Sickle Cell, Support Group
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2014 Sickle Cell Advocate of the Year

Posted: March 4, 2015 by sicklecellunite in Sickle Cell
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Presented by Sickle Cell 101

The Sickle Cell Advocate of the Year is an annual award presented by Sickle Cell 101 to recognize one devoted Sickle Cell advocate who has excelled in Sickle Cell advocacy. The Sickle Cell Advocate of the Year inspires others to make a difference by engaging the community and promoting Sickle Cell awareness. This is someone who has gone above and beyond to advocate for Sickle Cell. The 2014 Sickle Cell Advocate of the Year will be awarded and featured on all of Sickle Cell 101’s social media pages (Facebook, Instagram, Tumblr, etc.) and in the One-Oh-One newsletter.

Follow the link below:


Right now, there aren’t any in Sarasota or Bradenton that has a sickle cell pain management clinic or program. However, if you live in Sarasota, I personally recommend going to Doctors Hospital or Lakewood Ranch. Because, the wait times at Sarasota Memorial are way too long. My daughter sat in the waiting room for 2 hours in pain at Sarasota Memorial. They were telling me it’s because she needed to see a doctor and not just rushed back to urgent care where there is no doctor.

We recently needed to go back to the ER, but I chose to visit Lakewood Ranch Medical Center. The wait time was less than 10 mins and everything that needed to be done for her was done in a timely manner and she wasn’t in any pain this time. The triage nurse wasn’t familiar with sickle cell, which I could tell by the questions he was asking. However, the nurse assigned to my daughter was familiar and the pediatric doctor was as well. We arrived at 1:00pm and left around 5:30pm. Blood was taken, results were received, the hematologist in St.Pete was called, IV inserted, fluids received and it all was done in 4 and a half hours. (UPDATE 07/03/2016) I found out in November of 2015 that Lakewood Medical Center no longer has a pediatrics department, so taking kids there for serious medical conditions may end up having you wait for hours for EMT to come transfer them to another hospital.

I’ve never been to Doctors Hospital for any sickle cell related issues. However,their wait time is usually less than 30 mins in the ER and on their website they have information regarding managing sickle cell. So,  I could only ASSUME that they have some knowledge about sickle cell. I would personally would chose it over Sarasota Memorial.

Sarasota Memorial is where my daughter received her first blood transfusion back in 2001. At that time I was an advocate for Sarasota Memorial. We never had to wait in the ER.. we were always taken to a room or pre-admitted if the doctor called before we arrived. Now, all of that is out the window due to changes of the hospitals structure. However, they are very knowledgeable about sickle cell, so if it  is something serious that needs more than a “quick fix” I would probably go there first. I say this now since I have never been to Doctors hospital for any sickle cell related issues.

Stay away from Manatee Memorial!!! The doctors there are horrible and condescending. He blamed my daughters insurance carrier as to why they couldn’t figure out how to treat her. We had to demand to be released to All Children’s. This was in 2001. That was the first and last time I ever been to that hospital.

Sickle Cell Frequently Asked Questions

Why is Sickle Cell Anemia only found in Black people?
This is a very common mis-conception. Sickle cell anemia (sca) is not “only found in Black people”. White people in Greece, Sicily, Turkey, and their offspring around the world suffer from sickle cell anemia (sca). In fact, the highest incidences of the sickle cell gene (S, for short) are not found in Africa at all; they are in India and Saudi Arabia [References 1 to 10].

Why do people with sickle cell anemia not suffer from malaria?
A common mis-conception. A dangerous misconception. People with sickle cell anemia do suffer from malaria, and very badly too. Doctors who have been wrongly taught have been known to advise their sickle cell anemia patients traveling from Europe to the Tropics not to bother taking anti-malarial tablets because the sickle cells make them immune to the parasite. Dangerous advice, as malaria is the commonest cause of sickle cell crisis in Africa [ See also Question 8. References 9, 11 to 14, 21 & 22].

Why then do Science teachers always talk about malaria protection in sickle cell anemia?
Inadequate knowledge, or plain ignorance is the simple answer. I repeat: malaria affects sickle cell anemia patients more seriously than it does others. A sickle cell anemia child is one who has inherited sickle cell genes from both parents [S from father, and S from mother] producing the phenotype SS, which I have come to call ACHE-ACHE, that is one ACHE gene from father, and the other ACHE gene from mother. No one aches in the rainy season with just one ACHE gene. To suffer from cold season rheumatism, there must be contributions of ACHE from both parents. A child inheriting a sickle cell gene [S] from just one parent, and a normal hemoglobin gene [A] from the other parent is called Sickle Cell Trait [AS phenotype], which for simplicity sake I have come to call NORM-ACHE. This AS child does not have sickle cell anemia SS, and reacts to malaria differently.

This is done and all the promoting for it is over. However, I just want to celebrate that we met the signature goal and then some. I didn’t post here because I was so busy posting on other social networks and this one slipped my mind. However, I say keep signing and sharing anyway, let them know sickle cell is important!!


#boldlipsforsicklecell challenge. Check it out on instagram using the #boldlipsforsicklecell hashtag

T-Boz already did the challenge!


I accept #BoldLipsForSickleCell & I ask ALL my followers to accept & support!! Guys get creative your girl can give u a BOLD KISS on your cheek & that will work cuz your still wearing the lips!!! I dare u ALL #tboz #tlc #tbeezy #boom #yup #MakeADifference #Support #Charity #LetsGo