Posts Tagged ‘SICKLE CELL’

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:

https://docs.google.com/forms/d/1SPZdOEHijaLxnjIqfUBsV8lJexScjout3uDeAlhCpKA/viewform?c=0&w=1

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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!!

https://petitions.whitehouse.gov/petition/declare-sickle-cell-disease-national-health-priority-and-support-legislation-expand-and-establish/jFgQrMJ7

blpis

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

T-Boz already did the challenge!

tboz

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

Sickle Cell Slime-O-Rama!!

Posted: June 16, 2014 by sicklecellunite in Uncategorized
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Click Here>>Sickle Cell Slime-O-Rama!!

This is a cute little game that both kids and adult can enjoy!!

slime

He was a silent warrior. The majority of his fans did know he had sickle cell disease.

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General Da Smoove — another member of CSD — tweeted last night, “Sickle cell took my brother away from me today.”

Smoove adds, “With that being said I’m proud to know that with that disease he made the best of his life … I jus(sp) saw my bro literally fight for his life I told him ‘I love you bro’ hope’n he heard me.”

Read more: http://www.tmz.com/2014/06/07/jayare-cali-swag-district-dead-dies-teach-me-how-to-dougie/#ixzz33xy7Cpa