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@_kclife_

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Celebrating 30 years in Omega Psi Phi along with my LB @quedogg2dirtdogg. by @_kclife_

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Nearly nine years ago, our family was introduced to Sickle Cell Disease with the birth of our son. He was blessed through infancy and most of his toddler years with enough fetal hemoglobin to evade a serious pain crisis. In more recent years his crises have at times been crippling enough that he loses the use of his limbs. Watching your child scream through unmanageable pain, sometimes at the slightest touch, has often taken my breath away. Because of Sickle Cell, he’s had several hospitalizations, undergone blood transfusion, and missed multiple school days. The disease robs him of opportunities to play the sport he loves (soccer), and simply enjoy valuable time with friends and family. Through it all, he wakes up each day, (often with pain) and stands tall. He pushes through as a fun-loving, energetic, enthusiastic 8-year-old who loves life. He loves movies, legos, drawing, and his puppy. He’s working to be a kid DJ and dreams of one day being a scientist. My family prays daily for a cure to this diabolical disease. I felt compelled to shine a spotlight on our Super Hero. Thank you for supporting me during Sickle Cell Awareness month. by @_kclife_

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6 years ago

NIH researchers create new viral vector for improved gene therapy in sickle cell disease The new vector, for which the NIH holds the patent, still needs to undergo clinical testing in humans. Already an estimated 27 people with sickle cell disease have undergone experimental gene therapy using conventional vectors. Through its Cure Sickle Cell Initiative, NIH is working to accelerate the development of these and other new genetic therapies, including gene editing, with the goal of finding a cure for the disease. The initiative is part of NIH’s larger multi-pronged approach to reducing the burden of blood disorders. People with sickle cell disease can visit clinicaltrials.gov to find a clinical trial that is actively enrolling. by @_kclife_

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The late Mobb Deep MC Albert Johnson, better known by his stage name Prodigy, was an American rapper, author, and entrepreneur. With Havoc, he was one half of the hip hop duo Mobb Deep. ”My life before hip-hop was just pain. Sickle cell was my life before hip-hop. I ain't really have no life -- that was it. I'm growing up, that's all I know, just being in a ... hospital all the time. And then music ... The aggressiveness of it attracted me to hip-hop because I was angry inside. I was an angry kid because of sickle cell ... [hip-hop] helped me get my aggression out." -interview with NPR, 2013- Prodigy spoke about what inspired him to directly address his battle with sickle-cell anemia in his song "You Can Never Feel My Pain", from his debut studio album H.N.I.C. He attributed his nihilism to the "permanent physical suffering" caused by his lifelong battle with the condition. -In an interview with Vibe-
@mobbdeepqb @prodigymobbdeep
Photo by thefader.com by @_kclife_

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Sickle Cell Warriors PO Box 235973
Encinitas, California, United States
Email Phone Web
Sickle Cell Warriors, Inc. is a non-profit charitable organization dedicated to education, empowerment, and awareness about sickle cell disease. Their mission is to inspire those affected by sickle cell. Sickle Cell Warriors, Inc. is dedicated to providing resources, information, education, research, and support to the sickle cell community.

Sickle cell warriors are powerful people with an indomitable spirit. They are often in a constant fight on a daily basis to keep our head above water, deal with the pain, make the right decisions in life, deal with finances, medical bills and handle the backlash, negative vibes and criticism that having sickle cell brings. by @_kclife_

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6 years ago

Treatment For Sickle Cell Disease:
Specific treatment for sickle cell disease and its complications will be determined by your child's physician based on:

Your child's age, overall health, and medical history

Extent of the disease

Your child's tolerance for specific medications, procedures, or therapies

Expectations for the course of the disease

Your opinion or preference

Early diagnosis and prevention of complications is critical in sickle cell disease treatment. Treatment options may include, but are not limited to, the following:

Pain medications (for sickle cell crises)

Drinking plenty of water daily (8 to 10 glasses) or receiving fluid intravenously (to prevent and treat pain crises)

Blood transfusions (for anemia, and to prevent stroke; transfusions are also used to dilute the HbS with normal hemoglobin to treat chronic pain, acute chest syndrome, splenic sequestration, and other emergencies.)

A daily dose of penicillin beginning at 2 months of age until at least 5 years (to prevent infections).

Folic acid (to help prevent severe anemia)

Routine childhood vaccines in addition to flu vaccine, an additional pneumococcal vaccine given at age 2 and 5.

Bone marrow transplant (has been effective in curing some children with sickle cell disease; the decision to undergo this procedure is based on the severity of the disease and a suitable bone marrow donor.) https://www.nationwidechildrens.org by @_kclife_

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6 years ago

Sickle Cell Disease: Treatment Pearls

There is no clinical/laboratory standard for confirming an acute sickle crisis.
There are several variants of Sickle Cell Disease (SCD) with treatment differences. Electrophoresis can confirm the diagnosis.
Hydroxyurea can decrease crisis frequency, acute chest syndrome (ACS) events, need for transfusions, hospitalizations, and death.
Indications for chronic red blood cell transfusion include: failed hydroxyurea therapy, severe disease with genoptyes other than HbSS, or secondary stroke prevention.
Patients with SCD often have non-functional spleens; this requires closer evaluation of fevers, which can be life-threatening.
Serum creatinine (Cr) is not a good indicator for monitoring renal function in patients with SCD because of hyperfiltration and secretion of Cr into the renal tubules. Instead, follow urine albumin or protein to creatinine ratio annually.
Silent cerebral infarcts and resulting neurocognitive dysfunction are commonly overlooked issues in sickle cell disease.
Each patient with SCD should have a pain plan to manage pain at home, in the ED, and in the hospital.
https://thecurbsiders.com by @_kclife_

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6 years ago

One benefit of CBD oil comes from its ability to lower the pain and discomfort for those with sickle cell anemia. It could be used to help reduce the nerve pain involved with the condition, which is a particularly difficult type of pain to treat. I would like to thank @ultracurt for supplying us with CBD. Feel free to contact him for your CBD needs. by @_kclife_

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