THE FACES OF SICKLE CELLS...

I see Beauty

I see Strength

I see Purpose

THIS IS WHO YOU ARE!

You are Not Sick, you get sick.

You DON'T have a "disease", You have Sickle cells!

God chosen Army,

My heart melts for you!

Listen to voices inside of you-

Your sickle cells are crying

They need your HELP!

Fight for them and they'll fight for you!

God Chosen Army,

You are here for a reason beyond reasons.

Keep the fight; YOU ARE WINNERS!

And when you leave the battle field,

At the food of The Father you'll REST!

Keep smiling,

You are God's Testimonies!!!

#mayimayoSCDW

The strongest people have ever meet is sickle cell warriors, we are so hard working, serious on what doing and like learning, lot of God given talent is found in sickle cell

Help us @ MARVEL SICKLE CELL FOUNDATION to showcase our Talent

Sickle Cell Disease

Also called, by type of sickle cell disease: sickle hemoglobin C disease (also known as hemoglobin SC disease); sickle beta thalassemia disease (also known as sickle beta plus thalassemia disease and sickle beta zero thalassemia disease); sickle cell anemia (also known as hemoglobin SS disease, or homozygous sickle cell disease

What is sickle cell disease?

Sickle cell disease is a group of blood disorders that prevent the normal flow of blood in the body because of the effect on the hemoglobin within red blood cells.

·         Hemoglobin is the main ingredient in red blood cells, helping them carry oxygen from the lungs to other parts of the body.

·         Normal red blood cells have hemoglobin A, which helps keep red blood cells soft and round so they flow easily through small blood vessels.

·         People with sickle cell disease have mostly hemoglobin S (also called sickle hemoglobin) in their red blood cells.

·         Hemoglobin S can form hard fibers inside the red cells, causing them to reshape into sickle (banana) shape. Abnormally shaped red blood cells cannot move through blood vessels easily and at times are blocked from delivering oxygen to some body tissues.

·         Sickle cell disease is always inherited (passed down in families).

·         When one parent has sickle cell disease and the other carries only one of the abnormal genes, such as hemoglobin S, their child has a 1 in 2 (50 percent) chance of having sickle cell disease.

·         When both parents carry a sickle cell gene, but are not sick themselves, their child has a 25 percent (1 in 4) chance of having sickle cell disease.

How common is sickle cell disease?

·         Sickle cell disease is the most common inherited blood disorder in Nigeria, affecting about 2% to 3% of Nigeria population.

·         It can occur in all races but is most common in African-Americans and Hispanics. About one out of 365 African-American babies born in the US has sickle cell disease.

What are the symptoms of sickle cell disease?

Symptoms of sickle cell disease include:

·         Painful swelling of hands and feet

·         High fevers because of weakened defenses against bacterial infection

·         Severe pain in various parts of the body—may require hospital stays

·         Paleness, fatigue and rapid pulse because of anemia from fewer red blood cells

·         Chest pain

·         Trouble breathing

·         Enlarged spleen

·         Yellowing of eyes and skin (jaundice)

·         Delayed growth or onset of puberty

·         Abdominal (belly) pain

·         Infections, including urinary tract infections and pneumonia

·         Stroke

How is sickle cell disease treated?

·         Transfusions of red blood cells — are given every three to four weeks. This is the main treatment for fighting the strokes that can occur in children with sickle cell disease.

·         Complications can include iron overload, infection, antibody formation and unwanted transfusion reactions that can mimic symptoms, such as anemia.

·         Hydroxyurea — is a drug that is used to help reduce cell sickling as well as many of the major complications of sickle cell disease

·         Hydroxyurea is a once-daily medication taken by mouth.

·         The treatment goal is to boost normal hemoglobin levels by increasing the patient’s level of fetal hemoglobin (HbF), which normally decreases very quickly after birth.

·         Stem cell transplant — 

·         The cure was first performed successfully in 1983, when a St. Jude patient with leukemia and sickle cell disease received a bone marrow transplant. The procedure cured both diseases.

·         During a transplant, the patient’s bone marrow is replaced with marrow from a person who does not have sickle cell disease. The transplanted cells grow into healthy blood cells.

·         Even though bone marrow transplant is a cure for sickle cell disease, its use is limited because of the problems in finding a matched donor, and the complications associated with transplant.

·         Some types of stem cell transplants may be called “bone marrow transplants” because the cells come from the donor’s bone marrow.

·         Other treatments include antibiotics, pain medicines and psychological counseling. These are used mainly to treat side effects of sickle cell anemia.

What are the survival rates for sickle cell disease?

·         Overall, the lives of people with any type of sickle cell disease are typically 20 to 30 years shorter than those of people who do not have it.

·         Formerly, 50 percent of sickle cell disease patients did not live beyond age 20, and most did not survive to age 50. Today, with early diagnosis and use of recently developed treatments, the life expectancy of children with sickle cell disease has increased 98 percent. For example, people with hemoglobin SS may live to age 50 or older.

SICKLE CELL DISEASE CAN AFFECT ANY RACE

SICKLE CELL DISEASE CAN AFFECT ANY RACE

According to her, every time she looks up information on the Internet, look at brochures, books and etc this disease always shows an African American person. She understands that this disease is most common among the race but she wants people and society to know that this disease CAN AFFECT ANY RACE! Her two children both with Sickle Cell Disease, Sickle Cell Disease can affect ANY race! Her name is Vikki and her husband and she is a Caucasian couple with 2 beautiful boys that have from Sickle Beta Thalesemia Plus. She is of Italian decent and has a thalesemia trait. When she was pregnant she was tested and her doctor wanted to test her husband for it as well. She received a call several days later that he has a sickle trait. She was like "No way! Her husband has blonde hair and blue eyes." They thought at the time that this disease was only a black disease. They now have 2 sons that have sickle beta thalesemia plus, one with blonde hair and blue eyes. They are expecting their third child and will not know until after she is born if she also has the disease. They were told that this disease is a more mild form of Sickle Cell and can but usually does not experience the same problems that someone with SCD does.

Unfortunately their oldest, 4 years old, has experienced severe crisis in his back and legs. They have spent time in the hospital due to the crisis and fevers. Their youngest, 2 ½ has only had his hands swell with mild pain. She think that was what the doctors tried to prepare them for, not what their oldest experiences. When she was watching her children run and play it is always in the back of her mind if it will cause a crisis for him. Is he over doing it? Is he going to dehydrate? Hydration is the biggest factor for us and is what saves us at times. Although they have sickle beta thal plus, they still live with this disease EVERYDAY! Since she began writing this letter

Her youngest came down with a virus with symptoms of a fever only. Had him checked out but the next day he was very irritable and pale. She called the doctor at about 4:45 when he woke from a nap very lethargic, she noticed him falling over a couple of times. She brought him in to the Children’s Hospital as advised by his doctor and his hemoglobin was down to 4. His normal is about 9.2-9.5. They experienced their first blood transfusion and he has been tested and confirmed to have been affected with the Parvovirus which she was not aware of. Her next son became sick on Dec 8 for only 2 days but on the 12th woke with stomach pain and slight paleness. None of this was uncommon for him after being sick. At night she gave him a bit of Tylenol with codeine for the pain and he woke at 10:15 acting very "strange". He punched at his stomach and was not able to stand. She paged the doctor but during the day she spoke to the Nurse to let her know about him and told her he was playing but was just a bit tired with mild pain to his stomach. He said to bring him into the ER for a blood test. She left immediately and thank God she did. By the time she got to the ER his lips were blue! He went into resripitory arrest and he had splenic sequestration. His hemoglobin dropped down to 1.8! Yes….1.8!!! Doctor said he has NEVER seen that and the next few hours for him were critical. Here her son is in PICU on a ventilator and her husband and her are told is very critical. WHY!! Because of a virus—Parvovirus. Her son was in PICU for 18 hours and moved to the Oncology room for 2 ½ more days. He amazed his doctor and he told her along with every

Nurse that was there that he is their Miracle baby!!! Her children are affected by this blood disorder and they almost lost both of their children from just a childhood virus! THIS DISEASE DOES AFFECT ANY RACE! Today though they have both fully recovered and doing very well. She encourages everyone to find out all they can about this disease (SC). She heard of the Parvovirus but did NOT know that a simple childhood virus could have taken their children from them!

Again, she wants people to see other faces of people who suffer from this disease and to let everyone know it is NOT only a black disease. It can and it does affect ANY Race!

New Guideline for Managing Sickle Cell Disease Created

New Guideline for Managing Sickle Cell Disease Created

Sickle cell disease is a life-threatening genetic disorder affecting nearly 100,000 individuals in the United States; most of those affected are of African ancestry or self-identify as black. This disease is associated with many acute and chronic complications requiring immediate medical attention. Care for persons with SCD often lacks continuity. Primary care and emergency care health professionals need up-to-date clinical guidance regarding care of persons with this disease, according to background information in the article. 

In 2009, the National Heart, Lung, and Blood Institute convened an expert panel that developed the Evidence-Based Management of Sickle Cell Disease: Expert Panel Report 2014. Barbara P. Yawn, M.D., M.Sc., M.S.P.H., of the Olmsted Medical Center, Rochester, Minn., and colleagues produced a summary of this report and conducted a search of the medical literature to examine the strength of the quality of evidence for the recommendations. 

Among the strong recommendations: 

• For prevention: daily oral prophylactic penicillin up to the age of 5 years, annual transcranial Doppler examinations from the ages of 2 to 16 years in those with sickle cell anemia, and long-term transfusion therapy to prevent stroke in those children with abnormal transcranial Doppler velocity (elevated speed of blood flow in the cerebral arteries).

• To address acute complications: rapid initiation of opioids for treatment of severe pain associated with a vasoocclusive crisis (blockage of blood flow due to the abnormal "sickled" red blood cells getting stuck in the blood vessels) and use of incentive spirometry (a method of encouraging deep breathing with the use of an instrument to provide feedback) in patients hospitalized for a vasoocclusive crisis.

• For chronic complications: use of analgesics and physical therapy for treatment of avascular necrosis (a condition in which poor blood supply to an area of bone leads to bone death) and use of angiotensin-converting enzyme inhibitor therapy for microalbuminuria (a subtle increase in the urinary excretion of the protein albumin that cannot be detected by a conventional urinalysis) in adults with SCD.

• For children and adults with proliferative sickle cell retinopathy: referral to expert specialists for consideration of laser photocoagulation and for echocardiography to evaluate signs of pulmonary hypertension.

•A recommendation of moderate strength suggests offering treatment with hydroxyurea without regard to the presence of symptoms for infants, children, and adolescents. 

The authors note that some of the strong recommendations appearing in this guideline are supported by low- or very low-quality evidence, and that evidence is lacking in many areas important to care for individuals with SCD. 

"The process of developing guidelines for the management of children, adolescents, and adults with SCD has been challenging because high-quality evidence is limited in virtually every area related to SCD management. The systematic review of the literature identified a very small number of randomized clinical trials in individuals with SCD, demonstrating the extensive knowledge gaps in SCD and care of affected individuals. The expert panel realizes that this summary report and the guidelines leave many uncertainties for health professionals caring for individuals with SCD and highlight the importance of collaboration between primary care health professionals and SCD experts. However, we hope that this summary report and the SCD guideline begins to facilitate improved and more accessible care for all affected individuals, and that the discrepancies in the existing data will trigger new research programs and processes to facilitate future guidelines," the authors conclude.

Common anemia: Drug represents first potential treatment

Common anemia: Drug represents first potential treatment

An experimental drug designed to help regulate the blood's iron supply shows promise as a viable first treatment for anemia of inflammation, according to results from the first human study of the treatment published online today in Blood, the Journal of the American Society of Hematology

Anemia is a condition that occurs when red blood cells are in short supply or do not function properly. When an individual has anemia, the body does not get enough oxygen, since there are fewer red blood cells to carry the iron-rich protein hemoglobin that helps distribute oxygen throughout the body. This can result in symptoms such as weakness and fatigue.

The most common form of anemia in the hospital setting is anemia of inflammation, which occurs when the body's immune response is activated during illness or infection. When the body fights a disease, it deploys an inflammatory response that triggers increased secretion of a hormone called hepcidin that reduces the amount of iron available in the bloodstream. As iron is needed for the production of red blood cells in the bone marrow, many patients develop anemia.

The only current treatment strategy for anemia of inflammation involves targeting the underlying disease or infection; however, recent research has sought to explore additional options for patients whose inflammation is difficult to control or when the cause of inflammation is unknown. As the principal regulator of iron, hepcidin has become a target for researchers developing novel therapies for blood disorders. One hepcidin inhibitor, called lexaptepid pegol (lexaptepid), has demonstrated efficacy in treating anemia of inflammation in animal studies. Lexaptepid inactivates hepcidin, thereby maintaining the transport of iron to the bloodstream.

In order to evaluate lexaptepid's potential in humans, investigators induced a safe and temporary model of anemia of inflammation in 24 healthy male adults and randomized them to receive lexaptepid or placebo. Volunteers received a low dose of Escherichia coli (E. coli) endotoxin to induce controlled inflammation and received either lexaptepid or placebo 30 minutes later. After nine hours, iron in the blood stream had decreased in the placebo group, whereas this decrease could be prevented by treatment with lexaptepid.

In addition to determining whether lexaptepid interfered with hepcidin production, researchers also sought to determine whether the drug influenced the immune response. All volunteers experienced similar flu-like symptoms, increased body temperature and white blood cell count, and higher concentrations of inflammatory and signaling proteins, demonstrating to investigators that lexaptepid did not interfere with the immune response process.

"It is quite encouraging that lexaptepid helped maintain appropriate levels of iron in the bloodstream of healthy volunteers without compromising the immune response," said lead study author Lucas van Eijk, MD, of Radboud University Medical Center in Nijmegen, Netherlands. "We are hopeful that, with further study, this first-of-its-kind therapy could significantly improve quality of life for patients suffering from chronic illnesses."

Blood Transfusions Could Reduce Strokes in Kids With Sickle-Cell Anemia

Blood Transfusions Could Reduce Strokes in Kids With Sickle-Cell Anemia

A new trial involving nearly 200 children with sickle-cell anemia found that monthly blood transfusions could reduce the chance of strokes by more than half in children who have the condition, according to U.S. News.

Sickle-cell anemia — a disorder in which red blood cells adopt a rigid, sickle shape that blocks flow, causing strokes and other complications — is most common in children of African and Central or South American descent. According to the U.S. National Heart, Lung and Blood Institute, 1 out of 500 African-American children in the U.S. is born with sickle-cell anemia. “Silent strokes” — which lack discernible symptoms but have also been known to reduce a child’s IQ — affect 30% of those with the condition.

Researchers involved in the study, published in the New England Journal of Medicine, used an MRI scan to identify 196 children ages 5 to 15 with a history of silent strokes, and gave about half of them monthly blood transfusions over three years. Out of the group that had monthly blood transfusions, only six had another stroke during the study, in comparison with 14 children in the control group who had another stroke.

Allison King, a co-author of the study, explained in a statement released by Washington University School of Medicine that the blood transfusions helped to increase the number of healthy red blood cells and “lower the percentage of sickle-shaped cells in the patient’s bloodstream.”

The team stressed that all children with sickle-cell anemia — which was previously thought to be untreatable — should be regularly screened for signs of silent stroke. “Now that we have identified a viable treatment option, early detection of silent cerebral strokes should become a major focus for clinicians and families of children with sickle-cell disease,” Michael Noetzel, a chairman of the study’s neurology committee, said in a statement.

Researchers added that additional long-term studies were needed to determine whether regular blood transfusions could also prevent reduced IQ, which was not a focus of the study.