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/
Subscribe To Sickle Cell Disease Blogs
Posts
All Comments
Sunday, September 16, 2012
Sunday, August 26, 2012
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.
Below are some facts on sickle cell disease.
What Is Sickle Cell Disease?
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)
Wednesday, August 8, 2012
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
.
Sunday, July 22, 2012
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
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
Monday, July 16, 2012
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
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
Subscribe to:
Posts (Atom)