Posts Tagged ‘blood disorder’

Sickle Cell Support Group

Posted: April 11, 2015 by sicklecellunite in Children, Events, Sickle Cell, Support Group
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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 Beta Zero Thalassemia (Sickle BA-ta zero thal-a-SEE-me-a) is similar to sickle cell anemia. Your child’s red blood cells contain abnormal hemoglobin, called “hemoglobin S” or “sickle hemoglobin”. In addition, the red blood cells have a defect called thalassemia, which results in cells that are small in size and more pale than usual. Instead of appearing round or donut shaped, your child’s red blood cells are somewhat small, pale, and misshapen. Some may appear sickled or banana shaped.

Because sickle beta zero thalassemia is inherited, it is a lifelong disorder. There is no treatment or cure. Your child will always have a mild anemia or slightly low blood count. This may result in occasional tiredness or weakness.

There are several types of sickle cell disease. The most common are: Sickle Cell Anemia (SS), Sickle-Hemoglobin C Disease (SC), Sickle Beta-Plus Thalassemia and Sickle Beta-Zero Thalassemia.

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A recent argument in another sickle cell group inspired this post. Someone asked if Sickle Cell was a form of cancer. Most answers were no, including mine. I think since it’s now being treated with Hydroxyurea (which is used for cancer patients) they are thinking it’s a form of cancer. Hydroxyurea increases fetal hemoglobin production and slightly raises the total hemoglobin concentration in the body. Fetal hemoglobin reduces the chance that red blood cells will sickle in a person who has sickle cell disease which is to prevent to pain crisis and prevent frequent hospital stays. It’s use for SC warriors who have: Frequent painful events (at least three in a year), A history of recurrent acute chest syndrome, and Severe anemia.

A to Z List of Cancers – S

Salivary Gland Cancer
Childhood
Sarcoma
Ewing
Kaposi
        Osteosarcoma (Bone Cancer)
Rhabdomyosarcoma
Soft Tissue
Uterine
Sézary Syndrome
Skin Cancer
Childhood
Melanoma
Merkel Cell Carcinoma
Nonmelanoma
Small Cell Lung Cancer
Small Intestine Cancer
Soft Tissue Sarcoma
Squamous Cell Carcinoma – see Skin Cancer (Nonmelanoma)
        Childhood
Squamous Neck Cancer with Occult Primary, Metastatic
Stomach (Gastric) Cancer
Childhood

http://www.cancer.gov/cancertopics/types/alphalist/s

I don’t see Sickle Cell listed as a cancer or a form of cancer. Do you agree that sickle cell is NOT a form of cancer?