GET INFORMED! Sickle Cell Disease: What is it?

GET INFORMED! 

Sickle Cell Disease: What is it?

by Maya Bryant

Maybe you have heard of sickle cell disease, or even possibly know someone with the disease, but do you really know what it is? Sickle cell disease was introduced to me in high school as an inherited disease that affects mostly African-Americans, and then the teacher proceeded to the next topic.  In fear that most Americans also only had a brief synopsis of this major disease, I have created the ultimate guide to teach everyone all of the ins-and-outs of sickle cell disease.  Please follow throughout this series entitled “GET INFORMED!” to learn the p’s and q’s of disorders and diseases such as sickle cell disease and more.

How do blood cells work anyway?

A red blood cell is a mature blood cell that contains hemoglobin which is a protein that carries oxygen throughout the body. Normal red blood cells have hemoglobin A.  These blood cells are biconcave (curving in or hollowed inward) discs that are round and flat: suitable for changing shape and bending in arteries, veins, and tiny capillaries in the body without breaking.  These cells shoot through the body at a rapid speed allowing them to transport oxygen all over the body.  

What does this have to do with Sickle Cell Disease?

People born with sickle cell disease have genetically inherited the trait that makes red blood cells create Hemoglobin S rather than Hemoglobin A.  This causes the red blood cells to be converted into abnormally curved (sickle) shapes.  This abnormal shape decreases their ability to carry oxygen making the person anemic as well as causes the cells to become stiff and sticky.  These cells easily block blood flow in the blood vessels of the limbs and organs which causes pain and organ damage.  Patients with sickle cell also have a higher risk of infection than those who do not have the disorder.  

Normal Red Blood Cells and Sickle Cells

Who is impacted by Sickle Cell Disease?

Sickle Cell Disease affects 72,000 people around the world and is most prevalent in areas where malaria is endemic (ex: Sub Saharan Africa and India).  All races are affected by the disease, but in the United States it mostly affects African Americans.  1 in 12 African American have the sickle cell trait and 1 in 500 African Americans have the disease.  The disease affects roughly 1 in 36,000 Latin Americans. 

Image from http://anthro.palomar.edu/synthetic/synth_4.htm 

Stay tuned for more about Sickle Cell Disease, its effects on its victims, and how Preserve Our legacy is playing a role in helping to fight it. 

Bone Marrow and Cord Blood Awareness in July

Join Preserve Our Legacy as we recognize the following health awareness causes during the month of July.

African American Bone Marrow Awareness Month

African American Bone Marrow Awareness Month during July was first voted as a resolution by the United States senate in 2009. It was the effort of John C Frierson of “A Bone Marrow Wish Organization” a friend of Preserve Our Legacy. John started his organization in 2003 after saving the life of a 2 year old African American child. The purpose is to spread awareness to the Black community about joining the registry. This is the cause that started Preserve Our Legacy in 2007 and which we have been dedicated to ever since since. 

Read More about African american Bone Marrow Awareness Month 

Cord Blood Awareness Month 

Cord Blood Awareness Month is also extremely important to Preserve Our Legacy. Umbilical cord blood is a rich source for stem cells that can be substituted for marrow cells for the treatment of 76 diseases and disorders including Leukemia and Sickle Cell Disease. Expecting mothers have an opportunity to donate or bank their own cord blood. However most expectant mothers are not aware of this and the infrastructure for cord blood donation is inadequate. Therefore most umbilical cords are discarded after birth. Preserve Our Legacy has been running a one-of-a-kind Umbilical Cord Blood Program at Harlem Hospital in New York City since 2010.  Cord Blood Awareness is essential for the minority community because of the lack of adult donors as well as the future implications for cord blood treatment. 

other recognized health awareness causes this month

National Minority Mental Health Awareness Month

The US House of Representatives proclaimed July as Bebe Moore Campbell National Minority Mental Health Awareness Month in 2008, aiming to improve access to mental health treatment and services for multicultural communities through increased public awareness. Since then, individuals and organizations around the country have joined in celebrating the Month and increasing awareness. - National Alliance on Mental Illness

National HIV Awareness Month

According to the Centers for Disease Control and Prevention, there are more than 1.2 million people living with HIV in the United States and every year approximately 50,000 people are newly infected. African Americans remain disproportionately affected by HIV – while they represent approximately 14 percent of the total U.S. population, they account for approximately 44 percent of new HIV Infections. While there have been significant treatment advances in the 30 years since the first cases emerged, HIV is still a significant cause of death in some U.S. populations. In fact, HIV is the third leading cause of death for African Americans aged 35-44 years and the fourth leading cause of death for Latina women in this same age group, according to the most recent statistics from the Centers for Disease Control and Prevention. -

 www.nationalhivawarenessmonth.org. 

Juvenile Arthritis Awareness Month

According to the Arthritis Foundation nearly 300,000 Children Nationwide Have Been Diagnosed with arthritis which affects more children than juvenile diabetes and cystic fibrosis combined. Juvenile arthritis is one of the most common chronic illnesses affecting children yet it is often undetected or misdiagnosed when symptoms first appear. During July we focus on increasing awareness of early signs and symptoms of juvenile arthritis. Joint pain, stiffness and swelling around a joint may be early signs of a serious inflammatory rheumatic disease. Early medical treatment of JA can prevent serious, permanent damage to a child’s joints. There is no known cure however advances in research have produced new treatments that moderate and even stop the effects of juvenile arthritis, preventing significant disability in later years. - Arthritis Foundation

National Fragile X Foundation Awareness Month

The month of July is National Fragile X Awareness Month, to increase awareness and advocacy for Fragile X. Fragile X syndrome (FXS) is the most common cause of inherited intellectual disability and the most common known genetic cause of autism. Individuals with FXS can experience developmental delays ranging from mild to severe. Carriers of the Fragile X mutation are at risk of passing it on to their children and developing conditions of fragile X-associated tremor/ataxia syndrome (FXTAS), a Parkinson’s-like condition causing tremor, balance and memory problems in adults, and fragile X-associated primary ovarian insufficiency (FXPOI), a condition that can result in premature menopause for women as early as their late teens. -  The National Fragile X Foundation

International Group B Strep Awareness Month

Approximately 1 in 4 pregnant women carry GBS, the leading cause of sepsis and meningitis in newborns according to the U.S. Centers for Disease Control and Prevention (CDC.) GBS can also infect babies during pregnancy and the first few months of life. Not all babies exposed to GBS become infected, but, for those who do, the results can be devastating. GBS can cause babies to be miscarried, stillborn, born prematurely, become very sick, have lifelong handicaps, or die. Fortunately there are many ways to help protect babies from Group B Strep. - http://www.groupbstrepinternational.org/

UV Safety Month

Skin cancer is the most common type of cancer in the United States. Ultraviolet (UV) rays from the sun are the main cause of skin cancer. UV damage can also cause wrinkles and blotchy skin. The good news? Skin cancer can be prevented! Communities, health professionals, and families can work together to prevent skin cancer. Make a difference: Spread the word about strategies for preventing skin cancer and encourage communities, organizations, families, and individuals to get involved.  - Healthfinder.gov

Health Awareness During the Month of June

Join Preserve Our Legacy as we recognize the following health awareness causes during the month of June.

National Scleroderma Awareness Month

Scleroderma is a largely unknown autoimmune disease involving the hardening and tightening of the skin and connective tissues. There is no known cause and no cure. “Sclero” means “hard” and “derma” means “skin”. Symptoms include stiff joints, digestive issues, lung scarring, and kidney failure and can sometimes be fatal. SOURCE: Scleroderma Foundation

Aphasia Awareness Month

Aphasia is a disorder caused by damage to the parts of the brain that control language. It can make it hard to read, write, and speak what is meant to be said. It is most common in adults who have had a stroke. Brain tumors, infections, injuries, and dementia can also cause it. The type and severity of the disorder depends on which part of of the brain is damaged and how much damage there is. SOURCE: U.S. National Library of Medicine From the National Institutes of Health National Institutes of Health

Migraine and Headache Awareness Month

47% of the adult population experience headache annually. Over 37 million people in the U.S. are diagnosed with migraine. Almost 3.2 million Americans are missing work or school, are not able to perform daily chores, or cannot attend family or social activities because of chronic migraine. According to the National Headache Foundation these disorders are poorly recognized and inadequately treated. SOURCE: National Headache Foundation

Myasthenia Gravis Awareness Month

According to the National Institute of Health Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The name myasthenia gravis, which is Latin and Greek in origin, literally means "grave muscle weakness." With current therapies, however, most cases of myasthenia gravis are not as "grave" as the name implies. In fact, most individuals with myasthenia gravis have a normal life expectancy.

The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Certain muscles such as those that control eye and eyelid movement, facial expression, chewing, talking, and swallowing are often, but not always, involved in the disorder. The muscles that control breathing and neck and limb movements may also be affected. SOURCE: Muscular Dystrophy Association National Institute of Neurological Disorders and Stroke

National Men’s Health Week June 9 – 15 (ending with Father’s Day) 

The purpose of Men’s Health Week is to heighten the awareness of preventable health problems and encourage early detection and treatment of disease among men and boys. This week gives health care providers, public policy makers, the media, and individuals an opportunity to encourage men and boys to seek regular medical advice and early treatment for disease and injury. The response has been overwhelming with hundreds of awareness activities in the USA and around the globe. SOURCE: Men’s Health Network

World Blood Donor Day (June 14)

The focus of this year's World Blood Donor Day campaign is "Safe blood for saving mothers". Every day, about 800 women die from pregnancy or childbirth-related complications. Severe bleeding during delivery and after childbirth is a major cause of mortality, morbidity and long-term disability. The goal of the campaign is to increase awareness about why timely access to safe blood and blood products is essential for all countries as part of a comprehensive approach to prevent maternal deaths. SOURCE: (WHO) World Health Organization

National HIV Testing Day (June 27)

National HIV Testing Day (NHTD) is an annual campaign to encourage people of all ages to "Take the Test, Take Control."

Too many people don't know they have HIV. In the United States, nearly 1.1 million people are living with HIV, and almost one in five don't know they are infected. Getting tested is the first step to finding out if you have HIV. If you have HIV, getting medical care and taking medicines regularly helps you live a longer, healthier life and also lowers the chances of passing HIV on to others. SOURCE:- U.S. Department of Health & Human Services

Bone Marrow and Umbilical Cord Blood Registration Day in New York State

Three years ago Preserve Our Legacy, INC along with hundreds of donors, patients, and supporters met in the New York state capital of Albany to raise awareness about the lack of sufficient bone marrow and umbilical cord blood donors within ethnic communities in New York State. 

They met with their local legislators in support of Assemblyman Wright's bill "Jaden's Law", which would add bone marrow and umbilical cord blood to the New York State Donor Registry. The Jaden’s Law bill has yet to be voted on but May 1st every year is officially Bone Marrow and Umbilical Cord Blood Registration Day in New York State .

MythBlasters! Heart Disease and High Blood Pressure

written by Maya Bryant

Myth: I’m too young to worry about heart disease. 

Truth: How you live now affects your risk for heart disease in the future. One in three Americans have heart disease, and heart attack and stroke victims are getting younger. Many young people are developing heart disease recently due to higher rates of obesity, type 2 diabetes, and other disease.

----------

Myth: I hear that wine is good for the heart, so I can drink as much of it as I want. 

Truth: Only drink alcohol in moderation.  Heavy alcohol consumption can lead to a dramatic increase in blood pressure. 

----------

Myth: People with hypertension (High blood pressure) will experience nervousness, sweating, and difficulty sleeping as symptoms of the disease. 

Truth: High blood pressure is a largely symptom-less condition

----------

Myth: I was diagnosed with high blood pressure and I have been maintaining lower readings, so I can stop taking my medication. 

Truth: High blood pressure can be a lifelong disease, always follow your healthcare provider’s recommendations with caution.  

----------

Myth: I’ll know if I’m having a heart attack because I will have chest pain. 

Truth: Heart attack may only cause subtle symptoms including pain or discomfort in the arms, feeling lightheaded, and shortness of breath. Always call 9-1-1 if you just think that you are having a heart attack. 

----------

Myth: If you have heart disease, you need to take it easy.

Truth: Physical activity helps strengthen the heart.  People with heart disease should consult their physician with what physical activity is right for them. 

----------

Heart disease (also known as cardiovascular disease) is the leading cause of death for men and women of the United States. There are different types of heart disease including coronary heart disease, heart attack, congestive heart failure, and congenital heart disease. Symptoms these diseases share include: shortness of breath, a faster heartbeat, nausea, sweating, and palpitations. Heart disease can be prevented by changing many lifestyle habits including quitting smoking, lowering cholesterol, controlling high blood pressure, maintaining a healthy weight, and exercising.

High blood pressure (HBP) is a serious disease. Although it virtually has no symptoms and is often referred to as the “silent killer”, it can have deadly consequences if not treated.  HBP happens when the tissue that makes up the walls of arteries gets stretched beyond its healthy limit due to the force of blood flow being very high.  Possible consequences of high blood pressure include: stroke, kidney damage, memory loss, vision loss, and more.  HBP is diagnosed in a simple process by a healthcare provider by using an instrument called a sphygmomanometer to measure the systolic pressure (pressure of blood flow from during heartbeats) and diastolic pressure (pressure of blood flow between heartbeats). 

Source: heart.org

New Jersey Drive for Huntar this Saturday in East Orange

In Search of a Perfect Match for Huntar

Huntar is a young energetic and creative 10 year old from New Jersey.  She likes yoga, technology, loves to read, and excels at arts and crafts. A special treat for Huntar is a trip to Cold Stone Ice Cream.

In October 2013 she was diagnosed with a platelet deficiency known as ITP (idiopathic thrombocytopenic purpura) and later diagnosed with the blood disorder called aplastic anemia. This has all led to an official diagnosis of MDS (myelodysplastic syndromes). Simply put her bone marrow is not making enough healthy blood cells causing shortness of breath, periods of weakness, and she is susceptible to easy bruising or bleeding. In Huntars case MDS (also known as pre-leukemia) has a high likelihood of developing into Acute Myeloid Leukemia which is aggressive and difficult to treat

Doctors have determined that Huntar needs a bone marrow/stem cell transplant. New healthy transplanted bone marrow from a donor can save Huntar from this life threatening situation. Unfortunately Huntar does not have a matching donor in her family. Her best chances for a cure are to find a perfectly matching unrelated donor.

In the meantime she gets frequent blood transfusions which limit her activity preventing her from doing many of the things she loves. Huntar's parents Tony and Karen are asking the community to step up and get swabbed in hopes that a perfectly matching donor will join the registry.  

Black History Month: Food and Health in the Community

It’s Black History Month!

research/writer: Maya Braynt 

Editor: Akiim DeShay

February is a great month to reflect on African American history, its present, and its future. As previously mentioned in the blog, African Americans have the highest prevalence in many preventative diseases. Here are some of the more shocking statistics: 

• African Americans had the largest death rates from heart disease and stroke compared with other racial and ethnic populations in 2009
• Largest prevalence of hypertension among adults 65 years and older is in African Americans 
• The prevalence of obesity among adults from 2007-2010 was largest among African American adults 
• In 2010, the prevalence of diabetes among African American adults was nearly twice as large as white adults
• Infants born to African American women in 2008 had the largest infant death rate, twice as much as infants born to white woman
• Nearly 44% of African American men and 48% of African American women have some form of cardiovascular disease or stroke 

Although the general health of the nation as a whole has progressed, African Americans are still behind.  

A large factor in this issue can be attributed to cultural eating habits.  Lots of the foods commonly consumed by African Americans (greens, yellow vegetables, legumes, beans, rice, etc) are rich in nutrients; however, due to their preferred cooking methods as well as the consumption of meats and baked goods cause the diet to be high in fat and low in important nutrients such as fiber, calcium, and potassium.  

African American cuisine, also known as soul food, is more than just a type of food; it’s an important part of African American culture. It has been difficult to encourage some African-Americans to eat healthier due to these strong cultural beliefs regarding food. To many, food is about preserving cultural traditions and fostering strong familial ties.

Another factor that contributes to unhealthy heating habits is the lack of access to fresh foods in some of these less affluent struggling communities. For many it is more convenient and affordable to eat cheap fast food and unhealthy discount boxed grocery items available at discount dollar and convenient stores that line these communities. Some areas have even been designated as official “food deserts” because of their lack of fresh foods within a certain radius. 

A survey done by the U.S. Department of Agriculture found that 88 percent of African-Americans ate no dark green leafy vegetables, and about 94 percent had no deep yellow vegetables on any given day of the survey. Most African-American adults fall short of the Recommended Dietary Allowances for vitamin E, vitamin B-6, calcium, magnesium, and zinc. 

There is a lot that needs to be done in order to change the statistics listed hear.  Simple ways to do so would be eating more vegetables daily and consuming fewer fried dishes, sugars, soda, high levels of salt and other items that are known to be associated with the diseases listed in the beginning of this article.  Also, physical activity is equally as important: 30 minutes of physical activity is recommended daily. This workout doesn’t have to spent a gym; it could be anything from a kickball tournament with the family to dancing; as long as you’re moving.

MythBlasters!: Diabetes

written by Maya Bryant

Myth: I’m not overweight—so I won’t get diabetes.

Truth: Though maintaining a healthy weight can dramatically cut the risk of getting diabetes, genetics can still play a part."

--------

Myth: Diabetes is not that serious of a disease

Truth: Diabetes causes more deaths than breast cancer and AIDS combined, 67% of people with diabetes die from heart disease or stroke making this disease very serious.

---------

Myth: I don’t need to visit my doctor – I’ll know if I have diabetes.

Truth: Many diabetes symptoms are mild and go unnoticed, this is why it is very important to visit a physician yearly for checkups.

---------

Myth: I can’t be diabetic because my parents weren't diabetic. 

Truth: Many develop the disease with no record of it in their family.  Everyone should watch what they eat and exercise regardless of family history.

---------

Myth: Only adults get Type 2 Diabetes

Truth: Recently, many children have developed Type 2 diabetes due to the epidemic of childhood obesity  

----------

Myth: I have borderline diabetes.

Truth: You either have it or you don’t. Your doctor may tell you that you are on your borderline of developing the disease.

---------

If you don’t have diabetes, there’s a high chance that you know someone with the disease. This disease affects all races, but is most prevalent in African-Americans and Latinos.  Diabetes can lead to several complications such as heart disease, kidney disease, amputation, and even blindness. 

There are three types of diabetes: type 1, type 2, and gestational: 

Type 1 (also known as juvenile diabetes) affects children and young adults whose bodies do not produce insulin. Insulin is a hormone that converts food to energy. Fortunately, people affected by this disease can maintain a healthy life with insulin therapy and other treatments. 

Type 2 diabetes, hyperglycemia, is the most common form of diabetes. This type is developed when the body produces insulin, but does not use it properly: insulin resistance. The pancreas overproduces insulin to try to compensate for this malfunction, but the attempt is simply not enough.  

Lastly, gestational diabetes occurs in 18% of pregnancy.  This happens when hormones from the placenta mistakenly causes the mother’s body to be resistant to insulin, which results in the body not using all the insulin it needs for pregnancy. 

SOURCE: Diabetes.org