Posts Tagged ‘sickle cell disease’

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.

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

T-Boz already did the challenge!

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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 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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Sickle cell enuresis or “bedwetting” means that the kidneys no longer concentrate (condense) urine like they should.

This results in:what causes pain in the sickle-cell person

• Larger amounts of urine
• Going to the bathroom often to empty the bladder
• Bedwetting, even when your child does not drink a lot before bedtime

What causes sickle cell enuresis?

When abnormal sickle cells get trapped inside the small blood vessels in the kidneys, they block blood flow and keep the kidneys from working as they should.

This can cause:

• Making more urine, this makes it easy to become dehydrated (losing too much water)
• Loss of salt and water balance in the body
• Increased thirst to make up for the water that is being
• lost in the urine
• Damage to the kidneys, which may get worse with time

Your child’s ability to control the extra urine at night depends on:

• Your child’s age and sex. It is more common in boys and in younger children.
• How deeply your child sleeps
• If bedwetting runs in your family

What symptoms could my child have?

Symptoms made include any of these:
• Urination (voiding) more of during the day and night
• Wetting the bed at night

If your child has a fever, burning or pain when he/she urinates, call the doctor right away to make sure your child does not have a bladder infection

How can I help my child?

• If your child has a problem with bed wetting, talk to your healthcare provider

• Your child is not doing it on purpose. Do not get mad or punish the child.

• Make sure your child drink plenty of fluids during the day so that your child can limit the fluid in-take before bed. Keep your child well-hydrated to avoid of kinds of sickle cell problems.

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?

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“I’m not out to cure sickle cell, I’m out to disappear the ignorance around it” – WDC

Low Levels of Oxgen, Nitric Oxide Worsen Sickle Cell Disease

Low levels of both oxygen and the powerful blood vessel dilator nitric oxide appear to have an unfortunate synergy for patients with sickle cell disease, researchers report. Their studies indicate that the two conditions common in sickle cell disease, dramatically increase red blood cells’ adhesion to the lining of blood vessels walls and the debilitating pain crises that can result.

 

 

Source:http://fscdr.org

People with sickle cell go through all the stages of puberty like people without sickle cell. Usually, the age you start puberty is similar to others in your family. However, people with sickle cell often go through puberty at an older age.

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It can be tough not being as tall or as developed as other teenagers your age. Many people (not just people with sickle cell) go through puberty at an older age. You should not feel bad about yourself because your body is changing more slowly than others. It is normal to feel awkward about your body at times, but you should not constantly worry about it. If you are concerned about your pubertal development, talk to your doctor.

click link below

We want shirts! The funds raised are a + and will go towards our local Support Group Meetings

941 Sickle Cell Unite Support Group Shirts & Mini fundraiser

                                         

The purpose of this group is for Sickle Cell Warriors and their loved ones to come together to share experiences, strategies, victories, and increase awareness for those who aren’t familiar of the challenges that are faced of those living with Sickle Cell Disease.

We want to be able to have this group on a monthly basis so we can grow, learn, build friendships within our community and unite as one.

The shirts are our main focus, we need more out there to grab the attention of those who aren’t aware of Sickle Cell Disease. The funds raised will go towards anything that is needed to make our support group meetings more successful. Such as, venues, food, games, educational resources, and events.