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Group photo at Outdoor Sickle Cell Fashion Show on 19th June 2021. The Event was part of Sickle Cell Society Ireland [@Sicklecellireland] education and awareness programme of events. I was invited to take photos at the event
The 19th of June has been declared as World Sickle Cell Day by WHO. Every year Sickle Cell Society Ireland celebrate the lives of people affected by sickle cell in the World. This year in Ireland was the 9th year of official events
Outdoor Sickle Cell Fashion Show on 19th June 2021. The Event was part of Sickle Cell Society Ireland [@Sicklecellireland] education and awareness programme of events. I was invited to take photos at the event
The 19th of June has been declared as World Sickle Cell Day by WHO. Every year Sickle Cell Society Ireland celebrate the lives of people affected by sickle cell in the World. This year in Ireland was the 9th year of official events
Stockwell Hall of Fame mural painted by Dreph for Give Blood NHS to highlight and encourage donations.
Outdoor Sickle Cell Fashion Show on 19th June 2021. The Event was part of Sickle Cell Society Ireland [@Sicklecellireland] education and awareness programme of events. I was invited to take photos at the event
The 19th of June has been declared as World Sickle Cell Day by WHO. Every year Sickle Cell Society Ireland celebrate the lives of people affected by sickle cell in the World. This year in Ireland was the 9th year of official events
Outdoor Sickle Cell Fashion Show on 19th June 2021. The Event was part of Sickle Cell Society Ireland [@Sicklecellireland] education and awareness programme of events. I was invited to take photos at the event
The 19th of June has been declared as World Sickle Cell Day by WHO. Every year Sickle Cell Society Ireland celebrate the lives of people affected by sickle cell in the World. This year in Ireland was the 9th year of official events
Outdoor Sickle Cell Fashion Show on 19th June 2021. The Event was part of Sickle Cell Society Ireland [@Sicklecellireland] education and awareness programme of events. I was invited to take photos at the event
The 19th of June has been declared as World Sickle Cell Day by WHO. Every year Sickle Cell Society Ireland celebrate the lives of people affected by sickle cell in the World. This year in Ireland was the 9th year of official events
Sickle cell disease (SCD) is a genetic blood disorder that alters red blood cells. The disease affects millions worldwide and about 80,000 patients in the United States, in particular, one in every 500 African American births. A defect in hemoglobin (a protein that helps the cells carry oxygen through the body) causes red blood cells to become rigid and take on a crescent (sickle) shape, blocking small blood vessels and causing decreased blood flow, inflammation, pain and strokes in children. To date, the only drug approved by the Food and Drug Administration (FDA) to treat SCD is hydroxyurea, an anticancer drug that is indicated for use only in adults. Hydroxyurea is only moderately effective and has undesirable side effects that limit its use.
Credit: National Center for Advancing Translational Sciences (NCATS), National Institutes of Health
I feel like I should change the title to “Being Diabetic with Pregnancy”, because it seemed like I was a diabetic first and foremost who just happened to be pregnant. I knew less about my pregnancy than I did about my numbers.
I was diagnosed diabetic three months before becoming pregnant and was just learning about diabetes and how it affected my body when I found out I was pregnant. I was ecstatic! I was overjoyed! Until I went to the fertility doctor who told me, “You need to be in control of your diabetes. Your numbers need to be better or your child will have birth defects.” I was in shock. I had been trying to have a baby for three years and was hoping to enjoy the happy news for a little while.
Shortly after, I visited my OB and realized I would have to work hard to manage my diabetes during pregnancy. I gave myself insulin four times a day and checked my sugar four times a day. I tracked these numbers and called the OB’s office every day with the information. If I got busy or forgot, the office called me.
With all the stress, I finally felt I was doing right by my baby when my initial appointment for an ultrasound of the baby’s heart had to be rescheduled. They could not get me in for several weeks so I asked if I really needed the test being nearly full term. The doctor said that because I kept my diabetes under control, I was at the same risk as any other pregnant women. I was finally able to take a deep breath and know that I did the best I could for my baby.
My beautiful, healthy baby boy was delivered at 39 weeks. There were no problems. He was perfect! But what I learned is that diabetes is not a joke; it is a disease that you have to think about every minute of every day. And when you are pregnant, you have to worry what it’s now doing to you and to your baby. For me, it didn’t go away after the baby was born, so now I have to think about my diabetes every minute of every day so I can raise my baby, teach him a healthy lifestyle in hopes he does not get diabetes, and, most of all, I want to be here when he has children.
Learn more about being pregnant with diabetes here: www.cdc.gov/NCBDDD/pregnancy_gateway/diabetes.html
Outdoor Sickle Cell Fashion Show on 19th June 2021. The Event was part of Sickle Cell Society Ireland [@Sicklecellireland] education and awareness programme of events. I was invited to take photos at the event
The 19th of June has been declared as World Sickle Cell Day by WHO. Every year Sickle Cell Society Ireland celebrate the lives of people affected by sickle cell in the World. This year in Ireland was the 9th year of official events
Sickle cell disease (SCD) occurs in people who inherit two copies of the sickle cell gene, one from each parent. This produces abnormal hemoglobin, called hemoglobin S. [Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs.] When an individual inherits one copy of the sickle cell gene from a parent, the person is said to have sickle cell trait (SCT). People with SCT usually do not have any of the symptoms SCD and live a normal life.
Credit: Darryl Leja, National Human Genome Research Institute, National Institutes of Health
"I'm honored to share my family's experience with hearing loss. I am the mother of twins, David and Elyssa, who were born extremely early. One of the consequences of their prematurity is that both my children have permanent hearing loss.
"Emotionally, it was like being knocked back to right after their birth at 24 weeks. It was just so unfair! They had already been through so much! And this was entirely different than anything they had been through up to this point—this was permanent, not something that they would eventually outgrow.
"And while hearing loss is actually a disability I am familiar with, since my Dad is hard of hearing, I still could literally feel the track of my life shift beneath me after hearing that news. I knew in that moment that wherever I thought my life was going before, I was now headed someplace entirely different.
"We learned about the all-important 'speech-language acquisition window' and began to research cochlear implants. At the same time, I also began to learn sign language. Our goal was to give our children access to language in as many forms as possible. As much as possible, we wanted to put off forcing them into any path that would narrow their options. Don't misunderstand, I do want my children to be able to hear and speak so that they are not isolated from the larger culture we live in. I also felt though, that it was not entirely up to me… our children should have input into the decision of how they would communicate, too.
"As our preemies continued to grow and develop, we started to notice that they were hearing more than their tests would have predicted. The hearing tests showed that David's hearing had improved—in some ranges to a moderate hearing loss level—A miracle! Elyssa however, still tested as profoundly deaf.
"The time had finally come to get Elyssa a cochlear implant. It wasn't easy to go through for any of us but we are so glad that we did! Elyssa has done fabulous with her "cochlear elephant" as she called it at first, quickly catching up to where she was with her hearing aids and then surpassing that point. She had a hearing test at one year post-activation. I cannot describe the feeling of joy and pride I felt, sitting behind my "deaf" daughter, watching her respond to sounds I could barely hear. For David, hearing loss is not his major issue anymore, although it is still there. We certainly are in a different place than I expected six years ago, but it is also most definitely a good place."
CDC would like to thank Amy and The Rhode Island Assessment Program for sharing this personal story.
“When I was 17 years old, I lost all of my hearing in one ear. I learned that I had a genetic syndrome that caused tumors to grow on my hearing nerves. And I learned that someday I would become completely deaf in the other ear. I was devastated and frightened. I grew up with full hearing and didn't know anyone who was deaf. I couldn't imagine the world without sound. A few years later, a friend told me about a remarkable new technology called an alpha pager, a pager that could receive a message sent via a live operator. I was excited to think that someday this technology could help me.
“Soon my world got quieter, but I didn't really notice because it happened so slowly. After much urging from my frustrated family, friends, and coworkers, I got my first hearing aid. I can remember turning my hearing aid on for the first time and immediately hearing a soft, low-pitched noise. My eyes scanned the room looking for the source. My audiologist smiled and said, ‘That's the air conditioner.’ I went for my usual run that evening and was surprised to hear the gravel crunch beneath my feet and the croak of a bullfrog. I had forgotten that frogs make noise!
“But the sounds around me continued to soften. I began using captioning on TV only a year after a federal law was enacted requiring most new television sets to include a closed captioning feature. And I became unable to use the telephone only a few years after emailing became the norm.
“I'm completely deaf now. In addition to closed captions and email, I rely on technologies such as text messaging, IM (instant messaging), and CART (communication access realtime translation). Recent changes in technology, as well as other recent positive changes such as the passage of the Americans with Disabilities Act, have provided opportunities for people with disabilities that were not available 20 years ago. I sometimes think back to the excitement I felt when I learned that I might someday use an alpha pager, and I smile.”
CDC would like to thank Krista for sharing her personal story.
Outdoor Sickle Cell Fashion Show on 19th June 2021. The Event was part of Sickle Cell Society Ireland [@Sicklecellireland] education and awareness programme of events. I was invited to take photos at the event
The 19th of June has been declared as World Sickle Cell Day by WHO. Every year Sickle Cell Society Ireland celebrate the lives of people affected by sickle cell in the World. This year in Ireland was the 9th year of official events
“My name is Mike Higgins and I am a father, a pastor, a husband, a dean of students of a seminary, a minister, a full colonel in the United States Army, and I have Tourette syndrome.
“The first time I heard the word, ‘Tourette syndrome,’ from the doctor I had no idea what he was talking about. I had never heard of it. I didn’t know anybody who had ever heard of it before. There were a lot of days as a 12 year-old when I would lay in bed and think about what was happening to me that I could not control. It caused me to wonder, ‘Why was I born like this?’
“I think that I was not diagnosed until I was 28 years old because our family doctors didn’t know about Tourette syndrome. I had been training for three weeks in Death Valley, California, and I was really hot, really dirty, really tired, and my tics were all over the place. My battalion commander noticed and ordered me to get checked out. Finally, I met a neurologist who asked me if anybody in my family had ever had this. I told him that my grandfather did. And he said, ‘I think I know what you have.’
“I didn’t think that I was ever going to be married because it seemed like it was hard enough to just be single with Tourette syndrome. But in my family life now, it’s just who I am. I think that my wife Renee is such a spiritually mature woman and I still look up to her because she’s been my champion in all of this, helping me along, and has really been there by my side. She has never treated me as a victim and refuses to let me be a victim.
“The churches that I’ve been in have very celebratory worship styles. When I’m preaching, I don’t tic a lot; sometimes not at all. It seems like there’s a grace period I get when I’m focused on something that I’m passionate about. If we can educate the ministers, pastors, and religious leaders about Tourette’s, then they can go on to educate folks in their congregations, families of children with Tourette’s, and also folks who don’t understand Tourette’s.
“I don’t think Tourette’s takes away your dreams. I just think that it may put an extra wall or two between you and accomplishing your dreams. But you can get over the walls. As I say, ‘You may have Tourette syndrome, but it doesn’t have to have you.’”
CDC would like to thank Mike Higgins and the National Tourette Syndrome Association (TSA) for sharing this personal story.
“My story started when a young man met a young lady on the campus of Florida A&M University. On their first date he asked the young woman if she carried the sickle cell trait! That young man became my dad and the young lady is my mother. My dad carries the sickle cell trait and was well aware that if he married someone who also carries the trait, their kids had a 50% chance of being born with full blown sickle cell disease. He discovered that my mother is not a carrier of the sickle cell trait. The rest is history.
“I am the oldest of three children and the only one with sickle cell trait. The first time I learned I carry the sickle cell trait was as a freshman at the University of Georgia. I called home and my mother said, “Your dad has the trait, but I don’t recall the doctor saying you had the trait when you were born.” All newborns are tested for the trait in Florida, yet I had gone my whole life without knowing.
“Once I learned I had the trait I researched as much as I could and talked with the football training staff. They assured me that the trait would not affect my ability to play. There were four freshmen who tested positive for the trait along with me and we were assigned a trainer who watched us closely during practice sessions and on game day. I was not treated differently by my teammates and went about my life just as I had before. One day I learned that a football player had died from complications of sickle cell trait while participating in spring practice at another university. That’s when I realized that this is a serious issue and I should not take any chances with my health. I played at the highest level in college and it earned me a spot in the NFL.
“I knew from my research that it would not be good for me to play in high altitude, so I prayed I wouldn’t get drafted by Denver, which is at a high altitude. I ended up in Cincinnati and have played at a very high level without any adverse affects of the sickle cell trait. During the 2011 season we did travel to Denver to play the Broncos and that was the first time I can truly say I felt the effects of the trait. I could not breathe after a 10-play series and had to be given oxygen on the sideline.
“Some of the changes I’ve made in my life include eating healthy, avoiding drugs and alcohol, not smoking, and most importantly getting a lot of rest. Everyone in my family knows that I have to take my daily nap. I drink more water, sports drinks, and coconut water than ever before because it is important to stay well hydrated before and after activities.
“Having the sickle cell trait does not exclude an athlete from participating in sports, however, the training staff and coaches need to take precautions to ensure the athlete is not put in dangerous situations. In high school my coaches would get on me because I was always in the back during running drills and I often got very tired. I think back now and realize that it could have been a dangerous situation for me if over-zealous coaches or I had pushed too much during those hot days in south Florida.
“Each year I am saddened to learn of another young athlete dying from complications of the trait while participating in sports. This vicious cycle lets me know that not enough information, education, and spotlight are given to this issue. My goal is to start a foundation, with the primary focus on offering testing for athletes at the high school level and getting education for trainers and coaches on how to help the athletes be the best they can be.”
CDC would like to thank Geno Atkins for sharing his personal story.
"Leland has hemophilia. At 15 months old, Leland developed a complication called an inhibitor. This means that his body, his immune system, fights off the medicine – the infused factor VIII. That, quite honestly, pulled the rug out from underneath us, when the preferred methods of tr eatment were no longer options for us. The alternative clotting factors that we use to control bleeding are much less effective. His treatment more closely resembles that which was done a generation ago; he doesn't benefit from a lot of the advances in treatment that help his peers who don't have an inhibitor.
“The complications of long-term damage to his joints, the unrelenting pain, just general quality of life, that's been by far the biggest challenge. Another big challenge for us as a family and, for my husband in particular, is the high cost of hemophilia in general and treating an inhibitor in particular. My husband has had to make career choices based on maintaining good health insurance.
“Having a son with hemophilia and then, the added challenge of an inhibitor, is not always easy. As a parent, I would love to fix things and make everything better. The inhibitor has taken away a lot of the control that parents have in effectively managing hemophilia. We don't really have a proactive management of the bleeding; we have to wait until bleeds happen, and then deal with them from there. I've watched him sit out and miss a lot of important life experiences, including most of high school. It's not what I envisioned when he was a baby and first diagnosed.
“Fortunately, there have been many other positive life experiences that have come from having hemophilia. He's been in Washington advocating to his legislators, he's a regular guest speaker at Harvard Medical School, and he's traveled around the country for community events. How many teenagers get to do that? Hopefully these experiences help maintain some balance, for both Leland and our family as a whole."
CDC would like to thank Jane and her family for sharing this personal story.
“Our personal journey into this world of autism began just over eight years ago with the birth of our son, Perry. Since the beginning, he struggled immensely. The first thing we noticed was that he seemed very restless. He was always unsettled. He had a lack of recognition in his eye. He didn’t eat. He didn’t sleep. As each day passed, we recognized more ‘red flag’ characteristics of autism with repetitive behaviors, speech/sound delays and more.
“I put Perry’s name on the waiting list of every developmental pediatrician in and around Atlanta. I was told there would be a minimum 6 month wait time. Meanwhile, at 12 months of age, he was found to be eligible for the Babies Can’t Wait program (Georgia’s early intervention system) due to his developmental delays and he began a steady course of daily therapies. When Perry was 15 months old, we finally got an appointment with a Developmental Pediatrician. The doctor confirmed what I already knew: Perry has autism.
“I cried all the way home. I cried for 2 days, hoping and praying that I would be able to provide this child everything he needed. My research recommended 40 hours of ABA (applied behavior analysis) therapy, which insurance would not cover. I also found thousands of pages of different treatment approaches, all of which claimed to be effective in treating autism. I could not afford to make the wrong choice. My son’s future depended on it.
“In addition, I was 7 months pregnant with our daughter. Margeaux was born blue and immediately faced feeding and sleeping problems of her own. Margeaux’s health struggles continued, one after the other. She was also restless, but in a different way than Perry had been. When Margeaux was 12 months old, we found ourselves undergoing our second Babies Can’t Wait (Georgia’s early intervention system) evaluation. Margeaux’s therapy began and Perry’s therapy continued. Now there were two therapy schedules to juggle. Her ‘official’ Asperger’s diagnosis came at age 5. It was a long road.
“While typical children are scheduling play dates and extracurricular activities, our children’s lives are about therapies, day after day, year after year, usually 7 days a week. People on the outside cannot grasp the necessary skills that our children require help with.
“My incredibly special children have been a true gift. Of course, like any mother, I would take away their struggles if I could. I strive every day to be the kind of parent they deserve. I hope I am as much a gift to them as they are to me. They are a bright spark in so many lives.
My ultimate hope is that one day soon my children will live in a world where they will be accepted and appreciated, despite their differences. As long as I am here, I try to surround them with people who love and accept them as they navigate this world, because autism never takes a day off.”
CDC would like to thank Mary Elizabeth and her family for sharing her personal story.
"Is this hopeless?" Cynthia Frisina Gray asked upon learning about her daughter's diagnosis of cerebral palsy in 2001. Cynthia knew there was a possibility that Cathryn could have problems—she was born prematurely—but she never imagined the difficulties that lay ahead.
Though she seemed fine at first, after several months, Cynthia began to notice that sometimes Cathryn seemed very floppy, almost like a rag doll. Other times, she seemed to stiffen. "I knew she wasn't hitting the same growth and motor milestones like my older daughter," said Cynthia.
Several doctor's appointments later, she finally received a diagnosis of cerebral palsy. Cynthia immediately went to the Internet searching for anything and everything about cerebral palsy. She felt frustrated by the limited information she could find that specifically addressed the needs of parents.
Cynthia expressed her frustrations to Cathryn's orthopedic surgeon, who connected Cynthia with another parent of a child with cerebral palsy: Anna Marie Champion. Cynthia and Anna Marie set out to understand how they could help educate other families about prevention and treatment. But they weren't sure where to start. They read about spina bifida, a disabling birth defect of the spine, and about the discovery that folic acid can help reduce it. "That's what we want—our 'folic acid'—something that could help prevent cerebral palsy," Cynthia said. "We found out that we can't prevent and treat cerebral palsy without understanding the root causes of it." Tracking the number of children with cerebral palsy is the first step to understanding the characteristics and finding the root causes.
"Watching Cathryn go through the pain of two major orthopedic surgeries at such a young age is hard, but we know it's necessary to help her walk," said Cynthia. Today, Cathryn is thriving but her mother knows there will be many challenges ahead. "Like all parents, I hope and dream about my daughter going to college and having a fulfilling life," said Cynthia. "I also hope that one day we know what causes cerebral palsy so that we can help others."
CDC would like to thank Cynthia and Reaching for the Stars for sharing this personal story.
Outdoor Sickle Cell Fashion Show on 19th June 2021. The Event was part of Sickle Cell Society Ireland [@Sicklecellireland] education and awareness programme of events. I was invited to take photos at the event
The 19th of June has been declared as World Sickle Cell Day by WHO. Every year Sickle Cell Society Ireland celebrate the lives of people affected by sickle cell in the World. This year in Ireland was the 9th year of official events
"FASD has affected my life in many ways. I was born six weeks early and weighed three pounds, eleven ounces. As a child, I never knew what it was but it was hard for me to make friends and I found myself feeling afraid of others. School was very hard for me, especially math and English. I couldn't comprehend them. I completed high school and tried college, but it didn't go well. Then I got a job.
“Working was hard. I didn't know what I wanted to do and I went from job to job. I couldn't hold on to a job. It was hard for me because I developed anxiety, depression and an eating disorder. I still deal with that today. I see a therapist often and take medication. It's still a struggle.
“I do a lot of writing to express my feelings. It helps me. I also watch people very carefully to learn how to do certain things. I tend to read everything twice to comprehend what I am reading. For my anxiety, I avoid loud and crowded places. I always surround myself with people that I feel comfortable and safe with.
“I got involved with an organization called Al-Anon because I grew up in an alcoholic family. I do share my FASD story at the Al-Anon meetings. I always tell myself if there is one young woman who is thinking about having a child and who is drinking, if I share my story and that one person hears me, it's worth it.
“I want people to know that there is hope. I keep telling myself, if I can survive, others can too. FASD comes with a lot of shame and challenges. I always tell people to stop and think before taking that drink. Pregnant women should remember that they are not drinking alone."
CDC would like to thank Frances and the National Organization on Fetal Alcohol Syndrome (NOFAS) for sharing this personal story.
Hereditary blood diseases. Be guided by the results of the pre-marital genetic testing.
CHILDREN WHO SUFFER FROM SICKLE CELL & THALASEMIA BENEFIT FROM BLOOD TRANSFUSIONS - Please donate your blood.
السبب الرئيسي
في إصابة الأطفال بأمراض الدم الوراثيه
هو تجاهل الطرفين المقبلين على الزواج نتيجة الفحص الطبي الذي قاما به مما يؤدي إلى زواج رجـل حامـل لصفـة المرض من إمراة حاملة لنفس صفة المرض ، الأمر الذي يتسبب في ولادة أطفالهما مصابين بهذا المرض الخطير ..
الآثار السلبية الإجتماعية للقضية:
عملية الإجهاض في حالة ثبوت إصابة الجنين بهذه الأمراض .
الطلاق وهو أبغض الحلال عند الله عز وجل .
تزايد عدد المصابين بهذه الأمراض كل يوم .
السلوكيات الخاطئة : إهمال أهالي المرضى لعلاجهم – الآثار النفسية السيئة للمريض وعائلته جراء هذه الأمراض المزمنة
Special thanks to: Mrs. Hoda Al-Mansour.
JACKIE LEWIN, EM UNIT, UCL MEDICAL SCHOOL, ROYAL FREE CAMPUS
This image shows two red blood cells. The one in the front has been affected by sickle-cell anaemia, and displays the characteristic sickle shape (a flattened 'C' shape) common to the disease. Scanning electron micrograph.
“When AJ was born in 1992, there was a real lack of information and education about newborn screening and sickle cell disease. They just told us he was having a PKU shot and then the doctor actually called on the telephone and gave us his results. It wasn’t really something back then that they talked about. They just said that he has to have a PKU shot. We didn’t know then that it was newborn screening. The doctor told us that the newborn screening showed that AJ has sickle cell disease. I have the sickle cell trait and my husband has the trait. I didn’t really know anything about, or anybody with, the actual disease. But when the doctor said the word ‘disease’ I started crying because I knew that couldn’t be good. At that time, of course, I was devastated. I went to the computer and looked it up and saw what could happen to him and what was down the line for him.
“AJ had his first sickle cell crisis at about 8 months. We didn’t really know what to expect with a crisis, but the early newborn screening test was helpful because we knew he had sickle cell disease. When he had his first painful sickle cell crisis we would never have known to take him to the hospital. We probably would have just thought he was crying to be crying and put a bottle in his mouth. We knew something had to be wrong with him and we didn’t take it lightly. We took him to the hospital and they said that he was having a crisis in the top of his foot. It was important to have the newborn screening done so that we knew to watch for these things. If we hadn’t had the newborn screening done we wouldn’t have known what was going on with him and sought appropriate care right away.
“It’s important for parents to get newborn screening to know if there’s anything wrong with the child. If it’s sickle cell, it just makes you aware of what’s going on with the child, things to look for (if they’re dehydrated, not getting enough water, if they’re crying a lot from pain) because you don’t know that they’re hurting, they can’t tell you.” – Pam Green
AJ, at 19 years old, an accomplished singer and sickle cell disease advocate, has accomplished more than most teens his age and doesn’t let his condition keep him from reaching his goals. In addition to performing for two U.S. presidents, Clinton and Obama, the Grammy-hopeful has shared the stage with Elton John, the Canadian Tenors, Jason Mraz, Rob Thomas, and sang a duet with Jennifer Hudson. He continues to be a strong advocate for the community in his efforts to “put sickle cell on the map” by raising awareness of the condition so that someday it will receive as much attention as other high profile disease states such as cancer. He recently spoke with the kids at the Sickle Cell Disease Association of Mobile, Alabama and joined up with Remington College’s “3 Lives” blood drive campaign which raises awareness for minority blood donors and encourages people to donate blood.
“For the most part I have been able to meet all my goals, but I always strive for bigger goals in life so everything’s not complete just yet. My first aspiration was to be known as a singer and also as an advocate for sickle cell disease. I try to be that inspiration, you know. It’s not as bad as people try to make it seem. I mean, it is, but it’s not. People don’t have to be afraid of it; they don’t have to be held down by it. Try to find triumph in the situation.” – AJ Green
CDC would like to thank AJ and Pam for sharing this personal story.
Outdoor Sickle Cell Fashion Show on 19th June 2021. The Event was part of Sickle Cell Society Ireland [@Sicklecellireland] education and awareness programme of events. I was invited to take photos at the event
The 19th of June has been declared as World Sickle Cell Day by WHO. Every year Sickle Cell Society Ireland celebrate the lives of people affected by sickle cell in the World. This year in Ireland was the 9th year of official events
Banner for our Flickr account sharing teaching resources about sickle cell disease and blood disorders.
Early Gamna-Gandy body formation in the spleen of an individual with sickle cell disease. Gandy bodies are associated with portal hypertension, paroxysmal nocturnal hemoglobinuria, sickle cell disease, and many other conditions. They are caused by microhemorrhages resulting in hemosiderin, calcium and iron deposition, fibrosis and giant cells. In this case the giant cells contain hematoidin crystals which apparently are perceived as foreign bodies.
“Hematoidin, first described by Virchow, results from histiocytic breakdown of extravasated red blood cells into hemosiderin, which is converted to biliverdin, then reduced to iron free crystallized bilirubin, or hematoidin, in a hypoxic environment.”( tinyurl.com/toq5zyf). Because hematoidin can be converted back to biliverdin, it is not often seen.
Hematoidin is found in tissues where extravasated erythrocytes undergo degradation and “is identified in the tissues in four main forms: thread-like filaments in star-shaped clusters mimicking a Medusa’s head or cockleburs, irregularly shaped small crystals, aggregates of minute spheroids and rhomboid crystals”. (doi: 10.1111/cup.12522). The golden color of the crystals and filamentous granules likely results from adsorption of hydrophobic bilirubin-like pigments remaining after erythrocyte breakdown. Hematoidin may be found anywhere in the body approximately 5 days to two weeks after bleeding/hemorrhage. The crystals may be either intra- or extracellular but are often found extracellularly after 5-7 days in foci of previous hemorrhage. They do not stain with iron stains.
Reference on splenic Gamna-Gandy Bodies in sickle cell disease - tinyurl.com/w7zljz3
Image contributed by Dr. Yale Rosen - @yro854
Outdoor Sickle Cell Fashion Show on 19th June 2021. The Event was part of Sickle Cell Society Ireland [@Sicklecellireland] education and awareness programme of events. I was invited to take photos at the event
The 19th of June has been declared as World Sickle Cell Day by WHO. Every year Sickle Cell Society Ireland celebrate the lives of people affected by sickle cell in the World. This year in Ireland was the 9th year of official events
Outdoor Sickle Cell Fashion Show on 19th June 2021. The Event was part of Sickle Cell Society Ireland [@Sicklecellireland] education and awareness programme of events. I was invited to take photos at the event
The 19th of June has been declared as World Sickle Cell Day by WHO. Every year Sickle Cell Society Ireland celebrate the lives of people affected by sickle cell in the World. This year in Ireland was the 9th year of official events
Normal red blood cells flow freely in a blood vessel. The insert image shows a cross-section of a normal red blood cell with normal hemoglobin. (Graphic from National Heart, Lung and Blood Institute. www.nhlbi.nih.gov/health/health-topics/topics/sca/)
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