Happy Holidays from Tova! Breaking the Sickle Cycle

Annual Holiday Party at Bowlerama

 

Vitamin D Tests Aren't Needed For Everyone, Federal Panel Says

re-blogged from NPR
November 24, 2014 5:05 PM ET

Nancy Shute

 

 Click here,

Vitamin D Tests Aren't Needed for Everyone

 

Ethnicity may make a difference in vitamin D levels; African-Americans typically have lower levels, but it's not known if that's deficient or OK.

And then there's the fact that the blood test can be expensive, running $50 to $220. Since vitamin D supplements are cheap, some doctors say it's easier just to tell people to take supplements rather than mess around with a blood test.

Shots - Health News

Fewer Americans Need Vitamin D Supplements Under New Guidelines

In 2010, the Institute of Medicine issued a report saying that vitamin D is vital for bone health, but other than that there isn't evidence that low levels of vitamin D cause disease. It recommended that adults up to age 70 get 600 milligrams of D a day, with 800 milligrams for people over 70.

 

People can make vitamin D when exposed to sunshine. But many people in North America never get enough sun to do that

Stockphoto

Always talk with your healthcare provider before taking any Vitamin supplements. 

All the best,  Dr. Nina

                                             

 

 

Tova Cares: Healthy Tidbits Winter

Beat Holiday Stress with Mindfulness

Planning for the holidays and entertaining family and friends can be stressful in these hard economic times.  Especially when reflecting on loss loved ones can bring back unwelcome memories which may increase stress and unwanted emotions.  Those who have families who are incarcerated also ponder on their mental, physical and emotional well-being while doing their time behind bars.  Yes, the holidays present constant demands such as parties, baking cookies, cleaning, purchasing gifts on a ‘shoe string’ budget and entertaining.  I have found that planning ahead and sticking to a realistic budget before starting gift and food shopping is helpful.  Accept that family traditions change overtime as children and grand-children may be unable to visit due to their work and financial demands.  Acknowledge your feelings about these changes and find creative ways to connect and celebrate together such as sharing pictures, e-mail and videos.  Most of all, holidays can become a free for all by overindulging at holiday parties on sweets and alcoholic drinks.  Remember to get plenty of rest and continue to incorporate physical activity into your daily schedule.  Most of all take a breather and make some to for yourself.  Go to tovacaresblogspot.com to read Mayo Clinics, Healthy Lifestyle:  Stress management
                                
             http://www.mayoclinic.org/healthy-living/stress-management/in-depth/stress/art-20047544
            
             All the best,  Dr. Nina
       

Staying Mindful during the Holiday Season

WORLD AIDS DAY FORUM - DECEMBER 6th

Sent along by Duffy's Hope,

                  Guest Speaker is, "D.J. Mifflin" from Fox Hit Series, Sleepy Hollow

 

All the best,  Dr. Anderson

A Black Cosmetic Company Sells, Or Sells Out?

re-blogged from NPR

October 24, 2014 6:48 AM ET
Karen Grigsby

        There is a huge market for Natural Hair products for women of color and beauty product conglomerates are getting into the market.  I have been without a perm for over 2 years and my hair is much healthier than with a perm. Being that I am more environmentally conscious, I also wanted to liberate myself from the chemicals used in the perm products to straighten hair that aim to define ones ethnic beauty. The Environmental Protection Agency (EPA) has a website (Greener Products) to provide consumers with information about ingredients in hair products. Studies found that chemicals in hair products may increase risk of early puberty in children and higher rates of cancer in hair salon workers.  Another close friend of mine has gone natural and her hair looks great!   The entrepreneur (African-American woman) who started Carol's Daughter recently sold her company and brand to L'Oreal due to struggling sales and the competitive market of natural hair products.  Her products were used by celebrities fans on the A-list including Jada Pinkett Smith, Gabrielle union and Mary J. Blige.  
      Sort of reminds me of Madam C.J. Walker Madam CJ Walker Official site (1st African-American self- made Millionaire) whose company manufactured black hair and beauty products.  What are your thoughts?

Click on,
                                   Natural Hair product company gets bought by L'Oreal

Johnny Nunez/Getty Images

      Cosmetics giant L'Oréal purchased Carol's Daughter, a beauty company that sells natural hair and skin products for black women, earlier this week. It may seem like an unlikely chapter in the story of a business that began in a Brooklyn kitchen.

A Nap is good for the mind, body, soul and spirit

re-blogged from Well Within You by, Richard Pagoda-By Richard Pagoda    
                 "Make the most of your Nap"

   

    Taking a Nap is very good for the human body, mind, soul and spirit.  Most people know that I love to take naps and cozy up to a good novel and nap in between sitting on my comfortable couch.  In many countries, especially in Europe and Central America, the banks, schools and small business close down between 1-3pm.  People go home to eat and take a nap before returning back to work.  I thoroughly enjoyed this experience during my travels to Central and South America and Europe.        Here are more reasons why there are physical and mental health benefits for Napping.
All the best, Dr. Anderson

 

 

It used to be that naps were thought to be only for the idle, the lazy or super-young. In fact, scientific studies conducted years ago showed that napping reduced the quality of overnight sleep and could, in effect, do more harm than good to our health.
The fact is that the more we study the human body, the more we learn. Fast forward from the old studies to today and the latest studies show that napping, if done correctly, is beneficial.  Napping can promote good physical health, emotional health and even mental health.

    What do studies show?
The National Institute of Mental Health published studies that show napping boosts creativity, increases the ability to learn, improves understanding and information processing, enhances happiness, reduces anxiety and may even be linked to a lower risk of heart disease.In fact, in studies that compared how effective increased caffeine intake was to a short power nap, the nap won out.  Participants stated that napping helps to reduce fatigue, enhance mood and sharpen motor skills better than that cup of java.  Scientists speculate that that the brain may get fatigued during the day and a short nap helps the brain to catch up, although research is ongoing with regard to that theory. 

    Length of time
The most effective naps last only 10-20 minutes.  The reason is that a person only goes through the first stage of sleep, which is a very light sleep.  This means that upon wakening, there is no grogginess, but there is a noted increased in alertness and concentration.
A 60-minute nap, in which a person usually goes through sleep stages one, two and perhaps even three will show improvement when it comes to memory performance and information process. The downside is that a person is very groggy and slow upon waking.
After a 90 minute nap, in which one goes through at least one REM cycle, a person will show improvement in terms of creativity and emotional processing.  They may wake up less groggy than the 60 minute nap, but a longer nap may also affect the ability to sleep that evening.
Helpful hint: In order to sleep for only 20 minutes, you can drink a cup of coffee right before you take your nap.  Caffeine starts to kick in 15-20 minutes after consumption and will help you wake back up at the right time. 

    Tips for better napping

• Nap during the middle of your day.  For those who sleep from 10 pm to 6 am, a nap taken during the 1 pm to 3 pm hours is best. 
• Make the napping location quiet and dark. 
• Get into the habit of taking a nap. 

If you’re trying to add naps, but find you just can’t snooze, don’t worry!  Fifteen minutes of concentrated relaxation and meditation are the next best thing.  And once you get into the habit of resting during the middle of the day, you will find it easier to nod off during that time
- See more at: http://wellwithinyou.com/articles/make-the-most-of-your-nap.html/?source=mail&emd5=f359f8c366af68b4373434638e5c1ec7&token=00000008657328e#sthash.6AZ2yTdU.dpuf
Make the Most of Your Nap

We Did It! 100,000 Signatures received to restore the Sickle Cell Treatment Act

Sent along to the SCDAA Pennsylvania-Delaware Valley Chapter from the Sickle Cell Disease Foundation of California tonight!

At about 10:00 pm Sunday night we met our GOAL!!!

We just want to say thank you to all who helped out in this endeavor. It was close!!   If you tweeted, facebooked, emailed, chatted, yelled from roof tops and in the streets, we truly appreciate your support to get our voices heard. Not only did we get the required signatures, we also brought awareness to many about sickle cell disease.

THANKS AGAIN Thanks to EVERYONE who helped make this happen!!

You still have until Wednesday, 10/22/2014 to Sign!

Sickle Cell Treatment Act

 

Head of her class and Homeless

Re-blogged from NPR, At The Head Of Her Class, And Homeless

Amazed and truly inspired by this young leader, Rashema Melson who graduated from high school and valedictorian (4.0 GPA) of her class despite being homeless. More remarkably, Rashema did not hide her family’s situation from her friends and schoolmates but did not offer up the sharing. Rashema states, “ I don’t like sharing with kids because they start to pity you or they start to look at you in a different way.” No pity here-just resilience and tenacity to pursue a goal to become a Forensic Psychologist.

According to the National Law Center on Homelessness and Poverty

-Number of homeless people in the US 1,750,000

-Number of Americans who now live in hunger or on the edge of hunger 31,000,000

-Number of families who are lodging nightly in city shelters in New York City 6,252

-Number of children in the U.S. who live below poverty level. 12,000,000

-Annual number of food stamp recipients who are children 9,300,000

-Average monthly income for a homeless individual $348

-Percent of homeless that do not get enough to eat daily 28 %

-Percent of homeless that have problems with alcohol, drug abuse, or mental illness 66 %

-Percent of homeless persons that have been sexually assaulted 7 %

-Percent of homeless that have been homeless for more than two (2) years 30 %

-Percent of homeless women claim to have been abused within the past year. 25 %

-Percent of homeless women who claim domestic abuse as the reason for their homelessness 22 %

-Percent of homeless population that are Veterans / Vets 40 %

-Percent of homeless persons who are employed 25 %

-Percent of cities surveyed-identified domestic violence as a primary cause of homelessness 46 %

On Wednesday, Rashema Melson will graduate at the top of her class as the valedictorian of Anacostia High School in Washington, D.C. She's headed to Georgetown University this fall on a full scholarship. Even Melson isn't sure how she's managed to successfully juggle school (a 4.0 GPA), athletics (cross-country, track, volleyball) and homelessness. "I just know when I have a goal, I try not to let anything get in the way," she says.

"I would just say keep your head up because you never know what's going to happen," she says. "You just have to have hope and faith and don't let it change who you are. Don't become ashamed and don't be embarrassed. And just know who you are inside. Because you live in a shelter — that's not who you are, that's just where you reside at for the moment."

Picture by Meredith Rizzo/NPR

She says it's the best advice she can give; it's what she tells herself. Rashema Melson lives in the D.C. General homeless shelter with her mother and two brothers. "Because you live in a shelter — that's not who you are, that's just where you reside at for the moment," she says.

All the best Rashema. The future for you looks very bright as your pursue a degree in Forensic Psychology!

Dr. Anderson

7th Annual Bethel -Father's and Daughter Dance

An Evening of Elegance- November 15, 2014 from 5-10pm at the Chase Center

Bringing Fathers and Daughters Together for an Evening of Elegance

Pediatricians Say School Should Start Later for Teens

re-blogged from NPR Pediatricians Say School Should Start Later For Teens' Health

by Nancy Shute August 25, 2014 1:18 PM ET

Teenagers should get 8-10 hours of Sleep/day. Here is why...

Studies have found that lack of sleep in teenagers increases the risk of traffic accidents, and makes them more vulnerable to depression and obesity. Teens who get more sleep do better academically, with better standardized test scores and better quality of life. Caffeinating to get through the day or sleeping more on weekends doesn't make up for the sleep deficits.

Your Health Matters: President Obama-Restore the Sickle Cell Treatment ...

Your Health Matters: President Obama-Restore the Sickle Cell Treatment ...: Please sign the Petition to restore the Sickle Cell Treatment Act-HR Bill 5125 and re-establish Sickle Cell Treatment Centers throughout the...

President Obama-Restore the Sickle Cell Treatment Act

Please sign the Petition to restore the Sickle Cell Treatment Act-HR Bill 5125 and re-establish Sickle Cell Treatment Centers throughout the US. In 2009, funding was cut to the (10) Sickle Cell Treatment Centers and subsequently programs and jobs were lost at the centers around the country. I was fortunate to work at the Marian Anderson Comprehensive Sickle Cell Center at St. Christopher's Hospital in Philadelphia, PA. Our sickle cell center was supported by the Sickle Cell Treatment Act and your tax dollars. Working at a world renowned treatment center with psychologists, researchers, nurses, doctors and social workers was like working with an All-Star Team. Most importantly because we were all working to improve the quality of life for children, young adults and adults with sickle cell.

I recently met one of my patients, mother and grandmother at the Sickle Cell Conference in Baltimore, MD -October 2014. She literally brought tears to my eyes! Iyanna was a resilient but very fragile and shy child. Thanks to the sickle cell team of healthcare providers at the Sickle Cell Center and new medications like hydroxyurea, Iyanna is heading to college next year! Her mother and grandmother are still active in community organizations and advocating for Iyanna. "It takes a village to raise a child." Let's continue to support and re-establish Sickle Cell programs for Iyanna and thousands of other people living with sickle cell across the country. Dr. Anderson

WE PETITION THE OBAMA ADMINISTRATION TO: Declare Sickle Cell Disease a national health priority and support legislation to expand and establish SCD programs. Dear President Obama, Sickle Cell Disease (SCD) is Real! SCD is a major public health concern causing critical healthcare impacts in the nation. Reauthorization of the Sickle Cell Treatment Act – Bill H.R. 5124 will expand the national newborn screening program, develop a comprehensive adult transition program, continue public surveillance, expand research efforts and establish up to 25 sickle cell treatment centers throughout the US all in an effort to support the creation of a sustainable comprehensive model of care for individuals affected by SCD. We request acknowledgement and declaration of SCD as a national health priority; support of legislative Bill-H.R. 5124 and return funding for SCD programs in the President’s budget. Sincerely SCDAA & SCD Community sicklecelldisease.org Created: Sep 22, 2014 Issues: Family, Health Care Click on, https://petitions.whitehouse.gov/petition/declare-sickle-cell-disease-national-health-priority-and-support-legislation-expand-and-establish/jFgQrMJ7

Dr. Anderson Speaks at People's Settlement on October 12th

SICKLE CELL ANEMIA: AN UNSPOKEN DIEASE OF UNCERTAIN SUFFERING

Sunday, October 12, 2014 @ 1:00 pm

Peoples Settlement Association

408 East 8th Street Wilmington, DE 19801 Phone: 302) 658-4133 www.psassociation.org/

History of Peoples Settlement

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Sarah Webb Pyle was born in Wilmington, Delaware on March 6, 1869. Miss Pyle received her formal education at the Northfield (Massachusetts) Seminary graduation in 1899. After working for a short period of time in New York City she returned to Wilmington to found the People's Settlement in 1901. She devoted over fifty years of her time and talents to the children of "East Wilmington through the People's Settlement." She retired in 1952 and moved to Daytona, Florida. Peoples Settlement Association (PSA) was founded in 1901 by Sarah Webb Pyle. Ms. Pyle created the organization to address the needs of the European immigrants settling on the Eastside of Wilmington. The organization's primary focus was to assist them in making the necessary adjustments to their new home and to provide recreational activities for the family. Ms. Pyle initiated the organization with a mere monthly stipend of $15.00. She managed to support herself and provide recreational activities from a three room shack with her small income. Soon after, Ms. Pyle realized that in order to better serve her community she needed both funds and adequate space. Ms. Pyle placed her pride and shyness aside and sought out the assistance of one of Delaware's most prominent individuals, Mr. P.S. duPont. Mr. duPont admired the motivation and dedication that this woman had for her community and gave her $5,000.00 toward the building fund that ultimately resulted in the current structure located at 408 East Eighth Street. PSA, often called the "Miracle of East Eighth Street," became a safe haven for many in the 1940's. Ms. Pyle initiated the Peoples Settlement Association with little knowledge as to how it would maintain itself, yet she moved forward on faith in the future and in her community. It is this kind of faith and dedication that will forever embellish upon the legacy of PSA. Under the guidance of its founder, Sarah Webb Pyle and the executive directors which have included Mayor James H. Sills, Jr. and presently Mr. Keith Lake, PSA has continued its legacy of public service to Wilmington residents. Miss Pyle received many honors for her work. She was known as "the little mother of the East side" and also as the "Jane Addams" of Delaware. In 1951, the Lions Club presented her with a plaque designating her as the outstanding woman of Wilmington. Miss Pyle was also an honorary member of the Quota Club and a member of Grace Methodist Church. When the Wilmington School Board named the Sarah Webb Pyle School in 1953 they broke with tradition. Previously, no school had been named to honor a living person. Sarah Webb Pyle passed away on March 4, 1959

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Ebola, Ebola, Ebola

First Imported Case of Ebola Diagnosed in Texas

Ebola, Ebola, Ebola is been heavily broadcasted in the news and media over the last several weeks. The first case of Ebola was confirmed on September 30, 2014 from a traveler leaving West Africa to Texas. The person developed symptoms of the virus after 5-days of arriving in the U.S. The Center of Disease Control (CDC) has up-to-date information about the virus and provides question and answers for both the public and travelers alike (www.cdc.gov/vhf/ebola).

Ebola, previously known as Ebola hemorrhagic fever, is a rare and deadly disease caused by infection with one of the Ebola virus strains. Ebola can cause disease in humans and nonhuman primates (monkeys, gorillas, and chimpanzees). Ebola viruses are found in several African countries. Ebola was first discovered in 1976 near the Ebola River in what is now the Democratic Republic of the Congo. Since then, outbreaks have appeared sporadically in Africa.

Transmission: The natural reservoir host of Ebola virus remains unknown. Researchers believe that the virus is animal-borne and that Bats are the most likely reservoir. Ebola is spread through Direct Contact (through broken skin or mucous membranes in, for example, the eyes, nose, or mouth) with: • blood or body fluids (including but not limited to urine, saliva, sweat, feces, vomit, breast milk, and semen) of a person who is sick with Ebola • objects (like needles and syringes) that have been contaminated with the virus • infected animals • Ebola is not spread through the air or by water, or in general, by food.

Symptoms of Ebola include: • Fever (greater than 38.6°C or 101.5°F), severe headache, muscle pain, weakness, vomiting, diarrhea, abdominal (stomach) pain, unexplained hemorrhage (bleeding or bruising). Symptoms may appear anywhere from 2 to 21 days after exposure to Ebola, but the average is 8 to 10 days. Recovery from Ebola depends on good supportive clinical care and the patient’s immune response.

Recommendations:

Seek ER Medical Attention for Fever >101° F and ‘flu-like’ symptoms- based on exposure and person’s travel history.

Proudford Foundation-Rockin the Red for Sickle Cell Awareness

The Proudford Foundation also hosted their 9th Annual Fundraiser 'Rockin the Red' in Baltimore, MD on September 18th and is another organization supporting Sickle Cell Awareness in the tri-state area.

William E. Proudford was a devoted family man, colleague, and friend who led by example, shared his joy, but never his sorrows; did not raise his voice above a whisper, and yet spoke with conviction. His calm nature and strong character brought out the best in every person he encountered. He had a love for learning all of his life and set an example of consistently searching for opportunities to enhance his personal development. While in the Air Force, he obtained his GED, became fluent in German and even took a course in Russian. After completing 24 years of service in the Air Force, he excelled at Delaware State College, graduating summa cum laude and earning membership in the top honor societies. An avid reader and fast learner, he went on to earn a Master's degree and to learn new skills throughout his life. Despite a number of physical challenges, including sickle cell disease, progressive and profound hearing loss, diabetes and kidney failure, he always maintained the quiet, unassuming and steady manner that made him the bedrock of his family.

Our Vision A World Without Sickle Cell Disease

Our Mission To support sickle cell awareness, education, state-of-the-art treatment and research, and to bring hope to families affected by this devastating disease

To learn more about the Proudford Foundation or make a Donation, go to www.wepsicklecell.org

Hear from two Sickle Cell Warriors- Dr. Dejoie and Dr. Carlton Haywood

by Newsworks- Author, Jeanette Woods Sickle Cell Disease still persists 100 years after discovery

A look at sickle Cell Disease and why there aren't more promising options for treatment. Eight year old Nadir Tinsley is getting restless. He's hooked up to a pint of red blood at Children's Hospital of Philadelphia, pushing his IV pole down the hall. He wants to go play Wii with a friend in the activities room. Nadir's mom, Heather Hodges, gives up on trying to make him stay put so the little boy happily wheels his way to the game. "Nadir's a ball of energy," says Hodges. "But usually when its getting time for his transfusion, he's not so energetic. But after he gets the blood, ohh it's wonderful! He's so ---extra!" Nadir has sickle cell disease. The active eight year old gets blood transfusions every three weeks to help him avoid strokes as part of his treatment for the disease. Sickle cell disease targets red blood cells changing their shape and affecting their ability to carry oxygen and pass through blood vessels. The cells become stiff and sticky, clogging vessels or breaking up during circulation. One common, debilitating symptom is pain – it can be severe and incapacitating sending patients to the ER, and it can persist as constant, chronic pain for years. Patients suffer from anemia, organ damage and failure, stroke and a host of other complications that can lead to an early death. Sickle cell disease is genetic. It affects about 100,000 people in the United States, mostly people of African descent but also other ethnicities. It is considered an "orphan disease", defined as a disease that affects fewer than 200,000 individuals. Even though it is categorized as a rare disease, it's one of the most common genetic disorders in the United States. 'The forgotten disease' Doctor Kwaku Ohene-Frempong is the attending hematologist at Children's Hospital of Philadelphia, and the former director of the hospital's Comprehensive Sickle Cell Center. He's been studying and treating the disease for 40 years and knows firsthand how devastating it can be. Last year he lost his 40 year old son to complications from the disease. The average life span for someone with the disease is 40 to 50 years old. "People used to hear a lot more about sickle cell disease in the 70s than now and often they think maybe this problem has been solved," says Ohene-Frempong. "It hasn't been solved yet. There are many more children with the disease now than before." Despite the fact that it has been known and studied for over 100 years, and it was one of the first diseases identified as being caused by a flawed molecule - hemoglobin, there is no cure and it lags behind similar diseases in both research funding and media attention. "Everybody thought that if we embarked on gene therapy, sickle cell disease would be one of the first to be treated because it is so well known. But we've had gene therapy for 15 years or so and not a single bona fide attempt at gene therapy has been done on sickle cell disease," says Ohene-Frempong. While there are treatments for the disease, and life expectancy has increased over the years, patients and advocates are frustrated there hasn't been more progress. There is no treatment that will completely block complications and no universally effective cure on the horizon. Sickle cell disease is often called "the forgotten disease," but there are many patients and doctors working for better treatments and an eventual cure. Disparities and diagnoses If you are up early enough, and brave enough, you might be one of the regulars at Marjorie Dejoie's boot camp fitness class at the 12th Street Gym in Center City. Katy Perry's girl-power anthem "Roar" pours out of wall mounted speakers. "It's the M.A.D. Fit morning wake up call!" says Dejoie, as she turns up the volume, turns up the bass and turns up the tempo to energize the class. Dejoie's class is a one-hour, customized version of cross fit training called M.A.D. Fitness. If you watch Dejoie in action at 6 a.m., you might think that "mad" refers to anybody willing to submit to pushups at that hour. But the letters stand for "Make a Difference," which is what Dejoie strives to do, helping her students build strength and stamina. She teaches M.A.D fit twice a week, is a practicing physician and the medical director of the Philadelphia and Delaware Valley chapter of the Sickle Cell Disease Association. Dejoie has been teaching M.A.D. Fit since med school. She starts each day at 4:30 am and barely has enough time to fit everything in. Doctor Dejoie has sickle cell disease and for her, fitness is "prescribed." It's as important to her treatment as drugs and she has written about managing sickle cell pain without the use of drugs. "Even if you can never stay ahead of a chronic illness, this helps me keep going," she says. "I was diagnosed late in life. I wouldn't be as healthy without it." Dejoie suffered for years from debilitating attacks of severe pain, called a pain crisis. She was mystified by her symptoms. "I would get into a lot of pain and nothing would seem to alleviate the pain. And I couldn't reboot, I couldn't get any energy or even think until the pain subsided." For years doctors did blood work and took x-rays but never tested her for sickle cell disease. "At one point they thought I was just making it up," says Dejoie. "And I was like 'trust me, I would not make up what I'm going through right now.'" When Dejoie was born in New York in 1971 sickle cell disease was not included in the mandatory battery of newborn screening. The testing was not mandatory across the United States until 2006, although some states did test prior to the national mandate. She was diagnosed at 23 while she was a medical student at The University of Pennsylvania. She says she was lucky to be a student at a teaching hospital that was experienced in treating the disease. In my first year I had a crisis and one of the administrators looked at me and said, 'Your symptoms sound like sickle cell disease,' and I said, 'What in the world is that?" Doctors and advocates celebrated mandated testing but the lateness of the mandate is still frustrating.

Pushing for public awareness At a time when branding and messaging extends to disease awareness - think pink ribbon campaigns for breast cancer and red ribbon campaigns for AIDS – sickle cell disease is still playing catch up. In looking at disparities, the disease is often compared to hemophilia, a much rarer blood disease that seems to have better public recognition --- and cystic fibrosis, also more rare, but which annually brings in about 10 times more research funds. Dr. Carlton Haywood is a core faculty member of "Johns Hopkins Berman Institute of Bioethics." He has written about the role that race plays in the health care experiences of sickle cell patients. He recently had his second hip replaced due to complications from the disease. He had his first hip replaced in his early 20s after years of joint pain. His recent publication, The Impact of Race and Disease on Sickle Cell Patient Wait Time in the Emergency Department, found that sickle cell patients experienced wait times 25 percent longer than the "General Patient Sample." This occurred even when sickle cell patients were assigned higher (more urgent) triage numbers. He says "it would be naïve to overlook" the notion that race might be behind some of the disparities in funding and research advances for other diseases compared to sickle cell. He points to the predominately white "demographic make up of hemophilia and cystic fibrosis." "Given the nature of race and race relations in the history of the United States and given the history of this disease, and the fact that it has been mistakenly thought to be a purely race specific disease that only affects the black population and no other, I think that it certainly has played a role." Haywood says it's impossible to quantify the affects of race or racism on the advancement of treatment and research, but the issue is troubling. "When you take a look at some of the wide resource disparities between sickle cell disease and other conditions, unfortunately it still begs the question, it still raises the concern." Hoping for a cure Since newborn screening was mandated, the treatment landscape has looked more promising. The use of penicillin, starting early in chldhood, has made a big impact and cut down on complications. Diagnosed as a newborn, Nadir Tinsley was able to begin penicillin immediately and contiues to take the antibiotic. "Penicillin prophalaxis has reduced the highest rate of mortality in the disease that used to be seen in the first three to five years of life," says Dr. Ohene-Frempong, hematologist at CHOP. While nothing has been developed to completely block complications, Hydroxyurea, a drug originally developed for cancer, has been used to treat adults, and is close to being recommended for treatment in children. Bone marrow transplants have cured a small number of patients and Doctor Alan Flake, Director of Fetal Research at Children's Hospital, is working on a bone marrow transplant procedure that could be done in-utero – on fetuses diagnosed with the disease. Flake's research is seen as a "potential breakthrough" in moving towards a cure. While there are advancements on the horizon, adequate funding from individuals and corporate sponsors is still the main issue in sickle cell disease research. Dr. Ohene-Frempong says that sickle cell disease research has been going on at Children's Hospital since the 1970s and it still comes down to finding enough money to move the research forward. "We are close to solving some of these problems and we need the public's support and attention". Since she found out she had sickle cell disease, doctor Dejoie has focused improving the lives of patients and ending the disease - she lobbies on Capitol Hill, organizes fundraisers, researches and writes journal articles. Every day, she pushes herself to do a little more. Every day she pushes against time. "I get sick every week, every other week, every month, says Dejoie. "But I find a way to keep moving forward. We are survivors. We are warriors."

August 15, 2014 |The Pulse

The Walter Brandon Sickle Cell 5K Run/Walk this Saturday, September 27th @ Fairmount Park

Sickle Cell Champion, Walter Brandon lost his life from complications of Sickle Cell Anemia and was one of the founders of the Sickle Cell Disease Association of America (SCDAA) Del/Valley Chapter in Philadelphia that his wife Zemoria Brandon is the Director. I started working at the Marian Anderson Comprehensive Sickle Cell Center @ St. Christopher's Hospital in 2009, after he passed away. I would always hear patients, families and people in the community talk about Mr. Brandon and whished I could have met him. Mr. Brandon moved to Philadelphia, PA from Chicago, IL where he was recruited by the Director of the Sickle Cell program at St. Christopher's Dr. Carlton Dampier as the Social Worker of the sickle cell program. Sickle Cell Hematologist, Dr. Dampier heavily regarded Mr. Brandon and begged for him and his family to move to Philadelphia, PA after he finished Medical School and Residency at the University of Chicago.

Many patients and people in the community talked about his resilience and passion for giving back to children and families with sickle cell. Mrs. Zemoria Brandon (his late wife) shared with me that he was also social justice advocate for quality care programs and outreach for sickle cell. Even though he suffered from debilitating Avascular Necrosis of his Hips (bone rubbing on bone) and other complications as he got older, he came to work faithfully with his crutches. Mr. Brandon was at work where he suddenly collapsed and passed away.

17th Annual Walter Brandon Sickle Cell 5K Walk/Run Registration Opens @ 7am & Race Starts 8am Saturday, September 27th at Fairmount Park Sign-Up: www.sicklecelldisorder.com

Dr. Anderson thanks the community for supporting Sickle Cell Awareness in Delaware

Tova Community,

I appreciate the collective efforts and support for all who came out to support Sickle Cell Awareness in Delaware last Saturday, September 13, 2014 at Brandywine Park. In all of my professional career, I never seen such recognition from a disease that was oftentimes unspoken of. Today, thanks to better awareness and management of sickle cell, people are living long quality of lives. One of the gentleman in the 5K was a patient of mine who is 73 years of age and completed the 5K walk and won in his age group! Also had another patient with severe avascular necrosis of both hips (bone rubbing on bone) walked the entire 5K in honor of sickle cell. He completed the entire 5K race in pain but wanted to accomplish this goal. We will continue to soldier on in the fight but the future for Sickle Cell in Delaware and around the nation and world is looking bright! I encourage all young adults and adults to utilize the Sickle Cell Medical Home.

All the best, Dr. Anderson

Sickle Cell Awareness 5K Run/Walk tomorrow at Brandywine Park by the Zoo

September is National Sickle Cell Awareness Month.

Tova Community Health Inc. has its major fundraiser, Sickle Cell Awareness 5k Run/Walk on Saturday, September 13th at Brandywine Park (by the Brandywine Zoo) in Wilmington, DE. Registration starts at 9am and the Race begins at 10am. Sickle Cell Disease is one of the most common inherited blood disorders in the U.S. It is oftentimes misunderstood and invisible but can be very painful and debilitating. Today, thanks to better management of the disease, people affected by the disease can live a longer quality of life. According to the World Health Organization (WHO), Sickle Cell Disease is a public health priority that affects people of many ethnicities around the world. Over 2 million people in the U.S. carry the Sickle Cell Trait and can pass the disease on to their children. Proceeds from the event will help fund access to high quality of care programs and research to improve the quality of life for those affected by the disease.

Sickle Cell Awareness 5K Billboard on MLK Boulevard at the Riverfront

Tova Community, We are almost a week away from the 3rd James Faucett III 5K Run/Walk which will be held on Saturday, September 13, 2014 at Brandywine Park in Wilmington, DE by the Brandywine Zoo. Come out to show your support for Sickle Cell Awareness in Delaware.

Did you know? -Rapper Prodigy suffers from Sickle Cell Disease.

Tova thanks Clear Channel for the Billboard & Design.

All the best, Dr. Nina

Healthy Tidbits Fall Newsletter-September is Sickle Cell Awareness Month

Dr. Anderson receives a Proclimation from Wilmington City Council

Tova Community Health wants to thank Mayor Dennis Williams, City Council President Theo Gregory, City Councilwoman Hanifa Shabazz and Wilmington City Council presenting a proclamation to Dr. Nina Anderson on August 21, 2014. Dr. Anderson (born and raised in Wilmington, DE) published Sickle Cell research in a national medical journal:

Characteristics of Acute Care Utilization of a Delaware Adult Sickle Cell Disease Patient Population Nina Anderson, DNP, RN, FNP-BC,1 Jennifer Bellot, PhD, RN, MHSA,1 Oluseyi Senu-Oke, MD,2 and Samir K. Ballas, MD,3 Published in Population Health Management- February, 2014

Keeping Healthy with a Pet

Deciding to own a pet can take a lot of thought and planning. My German Shepherd, Theo is a high energy active dog who enjoys exercising and daily walks in the park. Theo has pushed me to get out of the house for daily walks in the park. After a long day of work, these walks help relieve stress, take in the beautiful neighborhoods’ surroundings and maintain a healthy weight. The National Institute of Health (NIH) found that our pets can help improve heart health, relieve distressed hospitalized patients coping with pain and life-threatening illness and reduce risk of obesity and depression. Another NIH study found that people who owned pets had lower heart rates and blood pressures at rest or when undergoing stressful tests than those without a pet. Most definitely, Theo has pushed me to get more exercise and socialize with the neighbors who all know him by name but not mine. On the other hand, owning a pet at times can get expensive because of vet doctor bills, shots, grooming and boarding. Ways to cut down the costs include: use vet clinics (SPCA), consider purchasing pet insurance, buy pet food in bulk and when going out of town get a friend or family member to check on your pet(s).

Overall, the physical and mental health benefits of the human-animal bond make owning a pet a great investment. Go to tovacares.blogsite.com to read the full article: Can Pets help keep you Healthy: Exploring the Human-Animal Bond.

3rd James Faucett III Sickle Cell Awareness 5K Run/Walk-September 13th on You Tube

Sign-Up and Register at www.races2Run.com

Did you know?

1:12 African-Americans carry the Sickle Cell Trait in the US &

1:100 Hispanics carry the Sickle Cell Trait in the US

Dr. Nina Thanks the Sickle Cell Advisory Committee for the Support at the Parks this Summer.