THE NEED FOR TESTING

I first learned of  Sickle Cell Disease as a freshman at Howard University. To say the least it was a mind blowing experience.  I was always told that my sickness associated with sickle cell disease was due to my being anemic. As a kid you never put two together.  As a black male at Howard I was reluctant to tell anyone about my disease. For many years I continued to hide behind a secrecy. I attribute this part to holding myself together and being strong.

It was a pact that I held with myself. I kept this from family, if possible, friends and even lady friends. Ultimately, my early knowledge allowed me to make some critical decisions. I was determined not to bring a child into this world with sickle cell disease. When I proposed to my wife we both knew my condition and desire. I think because of her knowledge she felt the same way. That we not take the risk and therefore she was tested and found not to have the sickle cell trait. We have three wonderful children and sometimes they complain of trait like symptoms but will never experience the devastating pain nor hopefully organ damage that I have experienced. They have full knowledge of the disease and can make appropriate decisions.

I was particularly interested in talking about testing after my wife and I overheard a couple in our hematologist office discussing finding out that she had sickle cell anemia and he had the trait,  therefore the baby would have sickle cell anemia. You see some patients are in favor of knowing prior to the birth of the baby.  It is only my opinion that one should know ahead of time what they are looking forward to. What's your opinion on the subject of testing and prior knowledge of newborn screening?  
A link on testing is provided below
http://labtestsonline.org/understanding/analytes/sickle/


 http://labtestsonline.org/understanding/analytes/sickle/

SEPTEMBER IS SICKLE CELL AWARENESS MONTH

For those of you who read this blog, you know this blog is dedicated to Sickle Cell Disease. September is a month in which sickle cell is highlighted by the National Institute of Health, therefore I have dedicated an article about sickle cell disease the last two years.  It is my desire that my readers will learn something and hopefully pass it on to those who wish to learn more by joining my blog.

In order for the sickle cell community effort to get the word out, we must develop the capacity to communicate appropriately through all the social networks. We must then put pressure on government agencies to fund innovative initiatives of finding a cure and we must support our foundation's efforts to obtain sustainable fundiing. Finally we should create a positive environment of collaboration.

As promised let's get back to the original intent of this post.  Keeping in mind that there are almost 2,000,000 people in the United States who have either sickle cell or a trait of sickle cell (carriers). Most have no symptoms and called carriers.  Carriers received a gene from one parent. When two carriers have children there is a 25% chance that they will have a child with sickle cell anemia.

Let's get started with some facts.

Below are some facts on sickle cell disease.
What Is Sickle Cell Disease?

Sickle cell disease (SCD) is a group of inherited red blood cell disorders.

• Healthy red blood cells are round and they move through small blood vessels carrying oxygen to all parts of the body.
  
• In SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle”.
  
• Sickle cells die early, which causes a constant shortage of red blood cells.
  
• Sickle cells can get stuck in small blood vessels and block the flow of blood and oxygen to organs in the body. These blockages cause repeated episodes of severe pain, organ damage, serious infections, or even stroke. (taken from CDC facts about sickle cell disease)

Sickle Cell Camp A Great Success

Camp Crescent Moon Celebrates Its 45th Year in Pacific Palisades Operated by numerous volunteers, the president and CEO of the Sickle Cell Disease Foundation of Southern California said she would like to start an endowment fund to help further finance the camp. An extra boost of laughter, excitement and outdoor education filled Temescal Getaway Park this week as Camp Crescent Moon celebrated its 45th year with its annual session in Pacific Palisades. It is considered the nation's first and oldest summer camp for children with sickle cell disease between the ages of 8 and 14, and many children from Los Angeles and around the country attend. It's partnered with the Sickle Cell Disease Foundation of Southern California. On Monday, President and CEO Mary Brown said they have about 85 campers participating this year, up from 80 in 2011.  "We lose about 10 percent of the children due to the illness," said the camp's director. Sickle cell disease which changes normal, round red blood cells into cells that can be shaped like crescent moons. Sickled cells can get stuck and block blood vessels, which stops the oxygen from getting through, causing infections, pain, and even stroke and anemia. However, many people are able to have a very good quality of life by learning to manage the disease. Amanda Shelton, Kimberly Washington and Lisa Washington, former campers now counselors from the L.A. area, said they are functioning sickle cell adults and enjoy coming back to teach the children about the disease. Portia Ragin, a camp counselor who comes from Atlanta, GA, said her father has sickle cell disease. "I just feel like I'm giving back to everything that affects him every day," she said. Brown said they have 47 staffers at the camp, which includes a medical team of volunteer nurses, doctors, social workers and counselors - some with sickle cell disease and some who do not. She said the counselors volunteering with the disease are called "palanca," which in Spanish means sacrifice. It costs approximately $100,000 for the camp to use the park for a week in the summer, Brown said, and they rely on cash and in-kind donations from their contributors. A charity auction was held earlier this month at Amoeba Music in Hollywood to benefit the camp. "We're on a shoe-string budget," she said. "I'd like to get a $5 million endowment for the program. We put a lot of effort into this project to make it happen. It's served as a model for other sickle cell camps." For more information about Camp Crescent Moon and how to donate and volunteer, visit their website. What a Wonderful experience for campers and staff. Donate your money, time, and energy to one of the oldest organizations for clients with Sickle Cell Disease. matthew.sanderson@patch.com .

EXPRESS YOURSELF

There are many moments throughout our lifetime that we are confronted with the desire to fully express how we feel. For the Black Male this is a daily paradox. As a male with SCD we get that double whammy because we feel dependency is a sign of weakness, yet we depend so much on family and friends to get us through our crisis.  Most of us grew up depending on others. As SCD became more prominent, the SCD community found a need to put in place pediatric clinics which would advocate care for us until we reach young adulthood. (17-18). Once we hit that threshold we look at our self as being grown and try to handle our illness in a compartmental area of our life. Some of us find that we are not able to handle the patchwork of our health plans, medical services and our daily routines.  In fact, it is difficult to find any adult programs that are focused on the transition from pediatric care to adult care. Sad but true, even if a program is available we have to take responsibility and get there.

In contrast, in the 1950's when I was an infant there was very little knowledge of Sickle Cell Anemia. There  were very few programs at all, if any.  Pain meds were sparingly used in crisis.  Transfusion therapy was non-existent. The patient and his mother were probably sent home from the doctor with some sort of iron shot and told to give aspirin every 4 hours, making the blood even thinner. You see, most of the time we were diagnosed as anemic, nothing beyond that. Generally, the only comfort if in crisis was constant rubbing of the joints involved, singing, television and comforting dreams.  What I've learned today is these attempts to minimize pain were the beginning of psycho-social behavioral modifications.  So let's give parenting the credit for being ahead of science. 


Despite the progress made towards pain management over the last 40 years, there is still a gaping hole between what is known to work and what is given to the patient with regards to pain management. The issues that complicate a more collaborative approach to pain management between patient and the medical community are, community concerns, emergency room responses, appropriate medications, accurate information, curricula development and fear and concerns of the patient. We need to express ourselves in raising awareness to pain management throughout the health care system and sub-systems each and every time we encounter them.

Was hospitalized for 3 weeks this past stay. I had pain that was not only Crisis related but also intensified by the need to have my shoulders, elbow, and to say the least my right knee replaced due to Avascular Necrosis. Ha! Ha! Which one is first? I have to look at our disease as a testament to our strength and Gods Blessing. How we feel allows us to live through these critical times even when we feel all is against us. We must communicate, (Social Media and the ability to get our word out through these mediums is a powerful tool.) Be Strong and Positive and let that sense of humor SHINE! Join my blog @ 1chanceonly-bigdaddy54.blogspot.com I thought this was a good poster... Take a look. https://www.facebook.com/photo.php?fbid=319934218076135&set=a.148627608540131.33233.135851093151116&type=1&ref=nf

CAMP CRESCENT MOON WORLD GAMES

This is my favorite time of the year. School is out and camps begin. I'm not talking about the Mitt Romney or the Donald Trump kids type camp. Not even scouting camps. I can remember going to Scouting Camp and almost coming home each year calling myself a failure because I never stayed the full amount of days due to crisis pain, too much excitement and chills from swimming in the lake. I would be devastated. Kids would tease me and say I was a "Weakling" then the rumors would start about the length of time I had to live. The bet was from 14-18 years old. Each year I celebrated their loss bet; however some children, including myself, have been scarred emotionally for many years.
   
You see in the 60's, camps had no idea of what was required to treat children with different diseases like SCD. Most Black Scouting Camps (in the south) had no doctors, counselors, teachers, etc. who were able to care for a camper who may have become ill. You had minimum staff and minimum equipment.
   
Going to SCD camps now, although under-funded, is a lifelong benefit in psycho-social behavior and coping skills which enable our children to live fuller lives. My children have been campers, volunteer counselors and administrators at Camp Crescent Moon (Sickle Cell Disease Foundation of California) since they were old enough to attend. Each year has been a labor of love for my family. Their appreciation for Sickle Cell Disease continues to grow.
   
Kids who attend camp look forward to meeting their peers who have SCD. They know they won't be bullied or teased because of their disease, unlike the humiliation I experienced 45 years ago.  They know the doctors, nurses, counselors, staff and all who volunteer without pay for that week are there because they love them and not because they sympathize with them.  Looking at each year's photos and hearing the wonderful stories warm my heart to no end and reinforces the importance of Sickle Cell Camps.  You see when I was growing up I had nothing to compare my Scouting days with. Suffice it to say, Black Scouting presented me the opportunity to grow into a young adult much like SCD camp does for the new generation of Sickle Cell Patients.


During the remainder of the summer or throughout the year you may have an opportunity to support your local state Sickle Cell Foundation.  Take the time to look at some of the photos or listen to testimonials and you will be convinced that this cause is worthy of your support.   http://1chanceonly-bigdaddy54.blogspot.com

WORLD SICKLE CELL DAY-JUNE 19

Continuous outreach is the only way we will gain momerntum and find a cure for SCD.


What can you do in recognition of this day?   Maybe give blood at the Red Cross.  Talk about SCD at your Church or a group setting.  Visit someone in the hospital.  Whatever it is, know that it will be appreciated.

World Sickle Cell Day

In the year 2008, the GeneralAssembly of the United Nations adopted a resolution which determines sickle cell disease as a public health problem and one of the world’s foremost genetic disease, requiring heightened awareness and activism, diagnosis and management. The result of the resolution was that June 19th was declared as World Sickle Cell to increase awareness of the condition all over the world.
The World Health Organization (WHO) has started work on a war footing to promote a world wide agenda to address hemoglobin dysfunctions.
WHO has made a commitment to:

• Recognize that sickle cell disease is a major health issue.
• Increase awareness of the world community regarding sickle cell disease.
• Eliminate harmful and wrong prejudices associated with sickle cell disease.
• Urges member countries where sickle cell disease is a public health problem to establish health programs at the national level and operate specialized centers for sickle cell disease and facilitate access to treatment.
• Promote satisfactory access to medical services to people affected with sickle cell disease.
• Provide technical support to all countries to prevent and manage sickle cell disease.
• Promote and help research to improve the lives of people affected with sickle cell disease.

World Sickle Cell Day

The World Sickle Cell day is celebrated across the globe with special emphasis in African Nations and Asia. The celebrations include a press, media campaigns, music shows, cultural activities, and talk shows.
Since no known cure exists for sickle cell disease, the main goal is to prevent further complications due to sickle cell disease. The main emphasis is hence on educating medical professionals, care givers, and associated personnel about prevention, research, and resources to minimize the complications due to sickle cell disease. Hence June 19th is devoted mainly to spread awareness, through talks, seminars, pamphlets, literature and consultations.


Taken From: AltiusDirectory.com

NFL 49ers Draft Cam Johnson Who Has Sickle Cell Trait

I received this link from the advocacy group, "SickleStrong". Thank you for this article.

Cam Johnson wants to be treated like any other draft ready college football player. Certainly his hard work indicates he deserves being rewarded fairly. Yet, this is not the case. Why? You see the NFL General Managers have done their risk assessment and can make the case to draft players like Cam at a lesser value using the SC Trait as the reason to draft him in a lower round and pay the lesser rate. Economics aside those of us in the Sickle Cell Community should applaud this young man for his commitment, hard work and pursuit of a life long dream. May God continue to Bless him and let us lift him up in prayer.

The link below is the San Francisco 49'ers press release regarding the 2012 Draft. Read some of the comments regarding opinions about Sickle Cell Disease and traits. There are many differing opinions from a lot of ignorant people. We need to educate and advocate as often as we can in order to clarify and remove barriers associated with SCD.


http://www.ninersnation.com/2012/4/29/2986396/49ers-draft-picks-cam-johnson-sickle-cell-trait

SCD-- Where They Are Headed and What They Are Leaving Behind ( A Series Of Discussions)

My sister in law, who happens to be President & CEO of The Sickle Cell Disease Foundation of California was in town attending "The Second National Conference on Blood Disorders in Public Health".  After talking to her my question was, where was SCD research headed and why was there no studies showing advances in Stem Cell or Bone Marrow transplantation.  Her reply was SCD is going Global.  That's where the action is; "New Born Screening".  Consequently, in this posting I will talk about an abstract presented during this session and what it means to adults with SCD.

ABSTRACT #1 (BS8-5)

Clinical Predictors Of All-Cause In-Hospital Mortality In Patients With Sickle Cell Disease in United States-First Reported Results From A Nationally Representative Sample.

RESULTS

In 2007, a multi site study of 166,084 admissions with a diagnosis of SCD was conducted. Males represented 37.5% of SCD related hospitalizations. There was a total of 844 deaths reported in the above admissions with an all-cause in-hospital mortality rate of 0.5%. Of these, 420 (49.7%) were females. These are astounding odds that SCD patients face when they are admitted to the hospital either through pain crisis, acute chest syndrome, and or development of sepsis. Intubation, as a cause of death occurs primarily after the patients organs began to crash in ICU.  In conclusion, the authors propose that early and targeted aggressive therapy based on the presence of these factors should guide the management of hospitalized SCD patients for improved mortality.

MY COMMENTS

As I write this, it makes me wonder why so much money, time and effort is put into research that we already know the answers to.  Fifty years of studying SCD has yet produced viable outcomes or protocols for hospitals to use in assessing patients with SCD.  It pains me as one who's had all of the above diagnosis; death still affects about 50% of those patients admitted with these diagnosis. By the grace of God and the relationships I have with my doctors allows me to post this blog today. 

One of the factors I did not see them discuss is how much of a contributing factor the amount of  pain meds a patient has taken prior to their ER admission. I pose this question because in 2005 I had an episode where after days of self medicating I wound up on a ventilator with Acute Chest Syndrome for almost 10 days.  Many SCD patients do not have the support group I had who could inform the ER doc of what types of pain meds I was taking, how long and the dosing.  This is important information that can go unnoticed and cause mortality.  My sister in law believes the lack of advocacy in the ER by a parent, family or friend to fully disclose pain medication usage causes an alarming amount of unwarranted deaths to those with SCD.   

In conclusion, we must communicate with our physicians (Hem/Oncs) the need for adequate and timely protocols for patients presenting with pain crisis as an underlying symptom of high mortality. What do you think?

Help Support Sickle Cell Camp For Children

I recently wrote about adding more content to this blog. Camp Crescent Moon is the oldest Sickle Cell Camp in the US. What's so unique is it has survived all of these years because of corporate contributions and individual donors who understand the hardship SCD presents to our youth.

My eyes were opened to barriers faced by our youth when I worked in Philadelphia, PA in the Pharmaceutial industry and visited the clinic and hematology floor at Chilren Hospital. What I noticed were children who wanted to enjoy camp with children who are like them. So, below is a link which will allow you to give support to "Camp Crescent Moon".

http://www.firstgiving.com/fundraiser/patriceragin/campwalk

Powerful Spoken Words About Pain...Sickle Cell Anemia

Russell Simmons "Young Voices" once again highlights Jasmine Baily's powerful spoken word on coping with pain affecting those with Sickle Cell Disease. Enough said!

http://www.youtube.com/watch?v=1OKkzFlWvbA

No One Should Be Alone

On Facebook a colleague ("Mindful Heart for Sickle Cell"), posed a question relating to being hospitalized alone and with no family or friends by your side.  It sheds light on many facets of our life such as; despair, self worth, and contiuous unhappines.  If we are fortunate we have family members and or friends who are concerned and understand our disease, willing to be by our side to comfort and encourage us. Some of us are so unappreciative that we run those who care about us away. We must be mindful that others give to us from their heart.

When I was a youth I knew that my family was there for me.  Although I didn't know I had SCA.  My parents would always say I was anemic but not that I had SCD.  When I would hurt they and my brothers would rub my aches and help me get my mind off the crisis by singing to me or helping me imagine my victories over the pain.  I say this because other than college and my first job, I can't remember when I was alone and checked myself into a hospital.  After getting married in 1981, I have never been alone.  My wife has always been by my side. Between her and my father they have slept in the same room with me on every admission.  That's love and devotion.  And I thank God for it.

Back to my comment regarding "being alone".  I wrote on the Mindful Heart webpage, "My family talks about this all the time when I am hospitalized by a Crises.  My wife is a big proponent of  looking out for care givers and realizing who has little or know support.  When I feel better, I try and talk with patients who are willing.  I am careful to assume a patient has SCD and sometimes that's a problem because a lot of us are not willing to talk about our disease in the public domain." Therefore, I do feel there are a lot of us out there who can have a much richer and more meaningful life if we seek each other out. 

One more comment.  If there is no one with the patient how do they know they are getting proper treatment?  This is not to say that those of us who have SCD don't get proper treatment in hospitals yet we've all had opportunites to question our care. Typically the patient is concerned with pain management and not necessarily with other treatments and testing.  My family motto has been, "caregivers watch the caregivers" because who cares more about you?  This is why I strongly suggest the we visit each other, talk to each other and pray for each other. No one should be alone.

A Time of Renewal

I hope all of you had a happy holiday season.  I certainly enjoyed mine.  What I was most appreciative of was my family being home during the holidays.  To see the smiles on the faces of my parents as their children's children rekindled relationships moved my spirit.  Yet, I right this blog not to pass on my feelings all the time but to inform and generate topics of concern and discussion. 

After the holidays I was hospitalized due to a fever of an unknown origin.  This really knocked me on my back but it also allowed me to think about what could be done to make this blog more attractive to the reader.  What I decided was to add more content. 

I received an email from the Sickle Cell Disease Foundation of California (SCDFC) regarding a concert given by Celine Dion for Boston University Medical Center to benefit their Sickle Cell Anemia program.  The benefit concert was held at Caesars Palace in Las Vegas.  While delighted that someone of her celebrity status would give of their time to benefit a primarily African American disease, it made me wonder where are the Black celebrities on the issue of advocacy and finding a cure. 

For many years those of us who suffer from Sickle Cell Anemia have wondered why our celebrities (athletes and entertainers) have refused to donate real dollars to programs and foundations across the country.  This disassociation has left many to discount the funding sources in the African American community.  So, does a Celine Dion benefit concert energize us to give or galvanize the tensions preventing real contributions from African Americans?

Thank you Celine for your concert and your advocacy.  Hopefully this will begin much needed conversation in the Sickle Cell community.

Click on the link below to view an article and footage of the concert.
http://www.multivu.com/mnr/54153-celine-dion-play-without-pain-children-s-sickle-cell-benefit