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Hi guys I'm Tito, I’m a 21 year old lover of life and a recent Psychology Graduate. For as long as I can remember I've had a passion for helping others and I guess that's why the idea of writing this blog about my health was weighing so heavily on my mind, so I can help and educate people through sharing my experiences.

For the majority of my life I viewed my diagnosis as something that has weighted me down but I am recently realising that I can use it to do the opposite, and I understand that although sickle cell is a part of me, it does not define me. 

Through this blog I want to change the typical perceptions people have about living life with this disability, encourage more people to talk about sickle cell and ultimately raise awareness.

I hear a lot of warriors smoke marijuana for mild pain and nausea relief.  I’m not endorsing marijuana with this article, especially if it’s not legal in your state. However, if it’s legal in your state why not? If you qualify for medical marijuana why not? I am and always will be an all-natural girl. I had acupuncture yesterday. I do homeopathy and aromatherapy, yoga, and meditation. I’ve been vegetarian for 27 years. I believe in natural over allopathic medicine. Several universities here and abroad have proven that cannabinoids work for chronic pain. Cannabinoids are the property in marijuana that reduces pain.

If you want to go a more traditional route, there is actually a pill form of marijuana. Tetrahydrocannabinol (Marinol) is the prescription the doctor can write for you that is a prescription for synthetic marijuana pills. However it lacks many of the compounds found in natural marijuana.

Sickle cell disease often becomes more severe – and pain episodes more frequent – during pregnancy, particularly in the third trimester. A pregnant woman with sickle cell disease is more likely to have a miscarriage, still birth, preterm labor, or a low-birth-weight baby and sickle cell pregnancies are almost always considered high risk.

Ideally, women with sickle cell disease should receive preconception counseling. This is because with early prenatal care and careful monitoring, women with sickle cell disease can have a healthy pregnancy and successful delivery. Women with sickle cell are more prone to pain episodes during pregnancy, especially during the third trimester.

Pregnancy creates intense demands on a woman’s body, and the normal physiologic changes of pregnancy – and common complications like anemia – can easily make the sickling of red blood cells worse. If blood vessels become blocked by sickled cells, body tissues may be deprived of oxygen and die.

“You’re too pretty to have a disease,” declared the nurse in the emergency department (ED) dismissing Constance Benson’s reports of unbearable pain, a byproduct of her sickle cell disease (SCD). Constance, who is in her late twenties, is a professional actress and model living in Kennesaw, GA.

It wasn’t until Constance’s blood tests came back with information about her blood count that she was treated with the care and attention she deserved. “If I had a broken leg, it would be different. If I was having a heart attack, it would be different. But because I had sickle cell disease and I look like a normal person, my pain was dismissed.”

Constance’s experience in the ED is not uncommon among people with SCD, a condition that causes abnormal, sickle-shaped red blood cells that can block blood flow and limit the amount of oxygen getting to the body’s tissues and organs.

The goal of Annual STELLAR Educational Symposium event is to bring together healthcare professionals, researchers, patients and families to foster the exchange of ideas and experiences. The aim is to develop interactions to develop a greater understanding of what bone marrow transplantation means to families who have a loved one who has sickle cell disease, and what to look for in the long term years after transplantation.

The symposium is an interactive learning opportunity between patients and providers to increase awareness of sickle cell disease and treatment opportunities. The STELLAR Educational Symposium is a joyous celebration of life, health, and total wellness.

When:

Saturday, 29 Sep 2018 from 1:00pm to 6:00pm (US/Eastern)

Where:

Health Science Research Building

1760 Haygood Drive, Atlanta

GA 30322

For most of us, the summer represents fun: playing outdoors, cooling off in a pool and enjoying a family vacation.

But for many children, teens and adults living with sickle cell disease, these activities can trigger an extremely painful “crisis” episode – the most common manifestation of this genetic, chronic, and deadly disease.

Crisis has been described as a severely debilitating pain: sharp, intense, stabbing, throbbing, and more uncomfortable than post-surgical pain or even childbirth. Worse, crisis can occur at any moment without warning.

Enjoying a summer day at the pool can end up in the hospital if you’re not aware of the crisis triggers. Crisis is the leading cause of hospital admissions among people with sickle cell disease. And, this recurring condition hospitalizes sufferers for 4-5 days on average, but may last a week or longer. Each year, there are about 100,000 crisis hospitalizations.

“My brother has sickle cell. After learning what sickle cell is I now know more about my brother”. Alvin is special and he has a special love for animals, especially Diamond. When Alvin and Diamond are together it helps to ease his pain. Diamond makes Alvin feel better- she licks his face, plays catch with him, lays on his leg when he is in pain and stays close to him when he is sad. Only Alvin can get Diamond to sit, run or roll over.

Dr. Erica Gamble collaborates with her son on this book based on her now 22- year old son, who has sickle cell anemia.

 Most of us aren’t looking for recipes that add calories. But for families with sickle cell disease, it’s a different story. Because kids and teens with sickle cell disease break down red blood cells faster than other children do, their bodies use more energy and need more calories to maintain health, avoid complications and keep pace with their peers.

High calorie foods and extra snacks can be very helpful. Recognizing this, and not seeing another resource that quite fit the bill, the sickle cell team at Nemours/Alfred I. duPont Hospital for Children, led by dietitian Michell Fullmer, developed a unique cookbook offering recipes for appealing calorie-dense meals and snacks.

For people with sickle cell disease, a diet that provides plenty of fuel in the form of calories, protein, vitamins and minerals helps to replace red blood cells.

This project is aimed to improve survival and quality of life for children with sickle cell disease (SCD) by instituting early infant diagnosis and establishing standardized care that is sustainable through capacity building of service provision in a comprehensive manner from laboratory diagnosis, prevention, treatment and rehabilitation. The project was implemented in Nigeria, the country with the highest disease prevalence, with the help of UK-based doctors, largely Nigerian migrants. The issue is particularly relevant in the targeted country in that the majority of SCD patients in the UK arrive from Nigeria and West Africa and the high mortality in Nigeria is a deterrent for those patients and families returning to Nigeria.

This project is using innovative web technology and scientific and clinical knowledge to create a novel web-based Case Management Registry product (“webCMR”). Along with this direct intervention to improve the care of patients with SCD in the ED, webCMR will also address broader goals that are intended to support public health policy, the application of scientific knowledge to healthcare, and the focused generation of new knowledge. At the process level, webCMR will be a system for integration, translation, and transformation for addressing health disparities in sickle cell disease, and for addressing deficiencies in the current economics of our health care system.

This project, "Empowering SCD Patients with Web Tools to Improve Care Communications," is supported by Small Business Innovation Research (SBIR) Grant Number R43 HL105070 from the National Heart, Lung, and Blood Institute.

Join the Sickle Cell Disease Association of America, Inc. (SCDAA) and singer,  actress, and advocate Jordin Sparks by becoming a member of  Generation S. From your earliest battle to your latest victory, and everything in between, share your story to help shape the conversation and increase awareness about sickle cell disease for generations to come.

Share your story about sickle cell disease by November 30th. Check back to see stories from around the country come to life. Up to 5 participants will be chosen to meet Jordin Sparks and work with a professional filmmaker on a video about sickle cell disease. 

Jordan McDowell, a 2014 alumnus of the University of Kentucky, has always been interested in the ways having a child with a chronic illness affects families. Part of this interest comes from his own experience with sickle cell disease.

McDowell knows first-hand the experiences and difficulties a child with a chronic illness can have when transitioning from their parents' care to a new environment like college. As a child, McDowell was diagnosed with sickle cell disease, a severe hereditary form of anemia in which a mutated form of hemoglobin distorts the red blood cells into a crescent shape which can block blood flow and cause severe pain.

Miracle kid Jordin Jackson speaks to living with sickle cell disease, raising money for her children’s hospital, and how to stay positive through pain. Jordin Jackson has a genetic blood disorder called sickle cell, which causes severe and unmanageable pain.

The body makes sickle-shaped red blood cells instead of round cells that gather together and prevent oxygen from getting to the most important parts of her body.  Jordin is the 2017 Children’s Miracles Network Hospitals Champion from California.

This week’s warrior in the spotlight by Sickle Cell Warrior is Brandin Whetstone. Brandin has a great life philosophy and lives every day to the fullest, achieves his goals, is a father, a mentor, plays sports, all even with sickle cell. He is the epitome of a sickle cell warrior.

"When I first found out that I had Sickle cell I was 7 years old. When I was born there were no signs of me having sickle cell at all. I was a very active kid. Then one day I was on a car ride with my Mom and Dad. I was sitting in the back seat then started to feel really sharp pains in my legs. My parents rushed me to the hospital. I could not stand up or walk. The Doctors had performed lots of tests to try and figure out what my problem was. They thought it was my appendix. So they went ahead and performed surgery."

For years, NFL wide receiver Santonio Holmes didn’t know why his arms, legs, and back sometimes cramped up when he played football. But 12 years ago, the birth of Holmes’ son, TJ, provided an unexpected answer.

A few months after his birth, TJ suffered from his first “crises,” or periodic episode of intense pain. This prompted a blood test that revealed the newborn had sickle cell disease (SCD), an inherited blood disorder passed down to him by his father and mother.

When both parents possess the sickle cell trait, there is a 25 percent chance the baby will be born with SCD, according to the Sickle Cell Disease Association of America.

Mikeia Green was born with Sickle Cell Disease. She shares her experience of how she managed sickle cell disease (SCD) in college. Ms. Green’s mother always took care of her but Mikeia left her home in Arizona to attend college in California. This brought a big change in her life when she started dealing with day to day struggles.

While in college, Mikeia never let her SCD condition limit what she could accomplish. She was involved in a variety of service and cultural organizations, tutored students, held a work-study job, and made time for the gym to stay healthy.

Mikeia reached out to the Sickle Cell Disease Foundation in California (SCDFC) for support and resources to help her find a doctor. She also connected with a social worker from the Children’s Hospital of Los Angeles to help her transition from her previous pediatric care to an adult care specialist.

Sickle cell and beta thalassaemia are inherited recessive conditions. 'Recessive' means a person can only inherit the condition if both parents are carriers. Each child born to a couple who are both carriers has a 1 in 4 risk of having the condition and a 1 in 2 risk of being a carrier. If only one parent is a carrier, their children cannot inherit the condition itself, but they still have a 1 in 2 chance of inheriting carrier status. Being a carrier will not affect the child's health.

If a woman discovers during pregnancy that she is a sickle cell or beta thalassaemia carrier, she will usually be advised to tell her partner and suggest he also has a screening test for sickle cell, thalassaemia and other variations (such as haemoglobin C, E, D or O Arab). For many couples, the test will show the male partner is not a carrier, and their baby will not inherit the condition.

As a mother, I know that I have a responsibility to vote on Election Day for many reasons, and when I walk in that booth to cast my ballot, I will be thinking of not only my own children but other kids and their parents all across the country who deserve access to quality, affordable health care.

As a parent, my main responsibility is the health and safety of my daughter, Chase, and my son, Chance. I’m sure parents everywhere can relate to that. As nurturers and providers, we embrace our role to protect our loved ones but we also need to make sure that our laws and elected officials reflect our priorities and our values.

And as I personally continue to battle sickle cell disease, it is very clear that my own health is very much tied to me being able to take care of my children. That’s really what the health care fight and this election is all about—the well-being of our families.

After a recent stint in the hospital, I began researching documentaries and photo series about sickle cell. Disappointed by what I found - sad stories, stories that narrow in on the pain and, stories that tell how there is no cure; I decided it was time for a different narrative. One of strength, hope and joy.  People living with sickle cell often call one another warriors. So I contacted my closest warrior friends and began discussing what it means to be a Sickle Cell Warrior.

Being born with Sickle Cell Anemia has its ups and downs. This disease has humbled me, and through that humility I've developed a better spiritual relationship with GOD. My image represents a fighter who wins.

Jeffrey Zuttah, 33, is a patient advocate, business development professional for the technology firm Quartet. In 2003, Jeffrey Zuttah was captain of state championship football team at his college and an academic whiz kid who dreamed of playing college football.

An All-American, he won a scholarship to the University of Michigan, but because of his disease, he wasn’t allowed to play. Zuttah transferred to Stanford University with his goal still intact. But less than a year into his football career, an SCD crisis ended his dream.

Zuttah, then, earned a degree in public policy and then an M.B.A. with honors from Harvard. Presently, he works with a firm that tries to improve outcomes for patients with concurrent chronic issues, and he volunteers as a patient advocate in local and national SCD organizations.

Ines Lukombo received a bone marrow transplant for Sickle Cell Anemia on August 26, 2009 at Children’s Hospital of Pittsburgh of UPMC at the age of 17. She was a senior at Crete-Monee high school in Chicago at the time of the transplant and was homeschooled during the process. Ines’ eight-year-old sister, Martha was a matched sibling donor who jokingly offered her bone marrow in exchange for onion rings.

Ines is now 23 years old and a student at the University of Pittsburgh studying Molecular Biology and English writing. She has since returned to the Children’s Hospital of Pittsburgh and worked with the Sickle Cell team as a research assistant. She has dedicated her life to Sickle Cell research and plans to make it part of her career as a Hematologist.

In college I raised $52 for cancer. I walked miles in my achy body because I supported cancer research, but also because it was the most relatable cause I could find. Like sickle cell, cancer patients called the hospital their second home.

Everyone cares about something outside of themselves. It’s the definition of humanity. It’s the reason there are advocates who walk miles for a cause.

However, I have found an undeniable shortage of people advocating for sickle cell. Our biggest supporters are the ones fighting with and for sickle cell disease, a blood disorder that produces misshapen red blood cells that deprives oxygen to very organs needed to survive. Alongside us are few; only those close enough to have a personal stake in our health.

When you meet 2-year-old Evelyn Islam, the first thing you notice is her grin. And her friendliness. And her curiosity.

You can't help but smile as she mischievously steals phones to play with. You can't help but be drawn into a conversation as she explains her surroundings to you in earnest toddler-speak. And you can't help but play right along with her as she shows you her collection of beads from Beads of Courage, an organization that supports children who have serious illnesses.

Although Evelyn's sickle cell anemia is a serious chronic medical condition, the fact that it isn't obvious from the outside makes it easy to see Evelyn for the person she is. It's easy for her to be defined by something other than her illness.

It has been quite a year for Ayòbámi Adébáyò. She is in London for International Women’s Day, as she was last year, when it was announced that her first novel had been longlisted for the Baileys prize. Stay With Me went on to make the shortlist and is now up for the Wellcome prize, the winner of which will be announced later this month. The novel was glowingly reviewed, not least by the New York Times’s high priestess Michiko Kakutani (“stunning”, “powerfully magnetic and heartbreaking”); Sarah Jessica Parker chose it for the American Library’s book club; and the author, who has just turned 30, has been interviewed in both the Paris Review and Vogue.

When we meet, she has come from the BBC, where she had been discussing the #MeToo movement in Nigeria. “It’s complex and very different across regions, across class, maybe even across religions,” Adébáyò says, describing what it means to be a young woman in her home country.

Over the past few years, many advances have been made in the fight against sickle cell disease, a group of inherited red blood cell disorders. Many of these advancements are thanks to the work being done by advocacy groups, such as the Sickle Cell Disease Association of America (SCDAA).

In a recent interview, Rare Disease Report ® sat down with the president and chief executive officer of the organization, Beverley Francis-Gibson, who highlighted the research presented at the 7th Annual Sickle Cell Disease Therapeutics Conference, which was held this year in New York. Francis-Gibson also discussed remaining challenges associated with the disease and the need for more efforts to promote awareness.

For more than a year, NeDina Brocks-Capla avoided one room in her large, brightly colored San Francisco house — the bathroom on the second floor. "It was really hard to bathe in here, and I found myself not wanting to touch the walls," she explains. The bathroom is where Brocks-Capla's son Kareem Jones died in 2013 at age 36 from sickle cell disease. It's not just the loss of her son that upsets Brocks-Capla. She believes that if Jones had gotten the proper medical care, he might still be alive today. Patients and experts alike say it's no surprise then that while life expectancy for almost every major malady is improving, patients with sickle cell disease can expect to die younger than they did more than 20 years ago. In 1994, life expectancy for sickle cell patients was 42 for men and 48 for women. A 2013 study found that life expectancy had dipped to 38 for men and 42 for women in 2005.

The Sickle Cell Podcast is an effort by the Sickle Cell 101, a nonprofit organization. It talks about sickle cell, sharing warrior experiences and providing sickle cell related education. To listen to the audio podcast, mouse over the title and click Play. Open iTunes to download and subscribe to podcasts.

Sickle Cell 101 is a 501(c)(3) nonprofit organization that specializes in sickle cell education on social media and other platforms. Their mission is: We are a non-profit organization educating all people affected by sickle cell through the use of social media.

In the U.S., an estimated 100,000 Americans live with sickle cell disease, or SCD. Yet, despite its impact, the disease and its patients remain largely out of the public eye.

This hour, C-HIT reporter Peggy McCarthy helps us understand why. We discuss the realities of SCD awareness and hear from a New Haven resident living with the disease.

Buy a shirt to support Sickle Cell Awareness. All funds raised will go directly to BOLD LIPS FOR SICKLE CELL. #boldlipsforsicklecell is committed to educate and raise awareness for sickle cell disease through its advocates wearing bold lipstick colors. By doing this, they are making a loud and boisterous statement which in turn gains attention along with conversations being sparked.

$20 

Gildan Ultra Cotton Ladies T-shirt

Ladies – Black

Sizes XS – XXXL

Join us on Saturday, September 22, 2018

Place: Belmont Avenue & Avenue of the Republic (In front of The Please Touch Museum)

On Site Registration Starts: 7:00 AM

Opening Ceremony: 7:30 AM

Run Begins: 8:30 AM and Walk Begins 8:35 AM

Awards Ceremony: 10:00 AM

Online pre-registration closes on Thursday, 9/20/18 @11:59 pm

Onsite Registration opens on Saturday, 9/22/18 @7:00 am

We look forward to seeing you there!!!

Sickle Cell Disease Association of Illinois is organizing 44th Annual Walk/Jog/Bike-A-Thon to raise sickle cell awareness. 100% of the proceeds from this event will go directly to fund programs that provide direct supportive services to individuals with sickle cell, as well as awareness and advocacy to the community.

When: Saturday, June 9, 2018 at 08:00–13:00 CDT

Where: Chicago Lakefront at 39th Street and Lake Michigan, Chicago, IL

Online Registration

The Sickle Cell Anemia Foundation of Oregon will host run, bike and walk-a-thon on September 15th during National Sickle Cell Awareness Month. Participation is free and donations are welcome. Be sure to share with all your friends and family and bring your walking shoes, running shoes or bikes out on Saturday, September 15th.

Sponsors: Muscadine, Toro Bravo, Self Enhancement, Inc., Martin Cleaning Service, House of Prayer and American Red Cross.

Date and Time:

Saturday; September 15, 2018

9:00 AM – 12:00 PM PDT

Location:

American Red Cross Building

3131 N. Vancouver Avenue

Portland, Oregon 97227

United States

Tammy Smith and her daughter Precious are helping to raise awareness about sickle cell disease. 

It wasn’t until Precious became so sick and nearly died that Tammy took her to a different hospital for treatment and learned that Precious had sickle cell disease (SCD). The inherited blood cell disorder causes red blood cells to morph into a crescent (“sickle”) shape and get stuck in small blood vessels. This blockage inhibits blood flow, which deprives tissues of oxygen and causes severe pain and tissue damage.

Precious received her first blood transfusion at the age of two. It was the beginning of many stays in the hospital that would prove isolating and difficult for the young family.

 Here are the details of 6th Annual Walk for Sickle Cell organized by Precious Organization:

Saturday, September 15, 2018

 Location:

Rock Spring Park, 2116 College Ave.

Alton, IL, USA

Lets go Golfing!

Naturally, we are talking about more than just golfing, but having fun. Sickle Cell Disease is a genetic blood disorder that makes life miserable for many people around the globe. Yet, it is most prevalent in African Americans, striking one in every 500 newborn babies. The only known cure for Sickle Cell Disease, a bone marrow transplant, is not so readily accessible. It is an extremely expensive procedure, placing it out of reach for most of the Sickle Cell Disease Association of Illinois' clients.

Meanwhile, until a universal, affordable cure can be found, the Sickle Cell Disease Association of Illinois will honor its covenant to "Help Ease The Pain of Sickle Cell Disease." Whatever you can do is appreciated.

Your participation in this event is a good way to feel good about the part you played in the effort to, "BREAK THE SICKLE CYCLE!"

When:

Saturday; September 22, 2018

Registration/Check-In - 12:00 PM

Shotgun Start - 1:00 PM

Location:

Ruffled Feathers Golf Club

1 Pete Dye Drive

Lemont, IL, USA

Martin center sickle cell initiative is organising its 22nd Annual sickle cell wall.

When: Saturday, 23rd June 2018 at 8:00 AM (Eastern)

Where: Riverside Park, Indianapolis

Registration:

$23.00 Early Registration (through 4/29 at 11:59 PM EDT)

$35.00 On-site Registration on 6/23 from 6:30 AM to 8:00 AM

The Annual Sickle Cell 5K Walk/Run is a premier fundraising event. Proceeds benefit of this program aims to aid and enhance the lives of those affected by sickle cell. This includes sickle cell education, family support, food pantry, monthly support groups, and advocacy.

Walk for Sickle Cell Austin is hosted by the Sickle Cell Association of Texas Marc Thomas Foundation, a 501(c)(3) organization that has operated out of Austin since 1997 and provides services for individuals throughout the state affected by sickle cell disease. The walk supports and champions families with sickle cell disease across Texas. All funds raised from this walk will go to support the agency’s annual Camp Cell-A-Bration, a camp for children between the ages of 6 and 14 with sickle cell disease. The walk will feature our community trait testing, live music, vendor communication, a memoriam presentation, and tons of family-friendly activities.Everyone is invited!

When: June 2, 2018, 8:00 AM

Where: Doris Miller Auditorium, 2300 Rosewood Ave., Austin, TX 78702, United States

Price: Adult Entry Fee $ 25.00, Child Entry Fee $ 15.00, Team of 10 Adults $ 240.00, Team of 20 Adults $ 480.00, Raffle Ticket $ 5.00

Online Registration

Lakiea Bailey, Ph.D

Sickle cell disease advocate, activist, research scientist...and occasionally...patient... with a doctorate in molecular hematology and regenerative medicine.

Our core objectives are raising awareness on sickle cell disease as well as educating the public to push for advocacy, thus, giving HOPE.

The American Sickle Cell Anemia Association or ASCAA, is an organization that provides quality and comprehensive services through diagnostic testing, evaluation, counseling, education and support to individuals and families at risk of Sickle Cell Anemia. The ASCAA is a non-profit 501(c)3 located in Cleveland, Ohio. Founded in 1971, the ASCAA is the oldest sickle cell research, education and social services organization in the United States.

Hospital Chatter is an online facebook group for people in the sickle cell community, who are in the hospital, as a patient or a loved one, and want to talk. We are not doctors, so we are not here to offer medical advice, just conversation with people who can relate to what you are going through. If you can't sleep or you need to talk in the middle of the night, we're hoping you can find someone on this group (consisting of people from all over the world) in every time zone.

You are NOT ALONE! #SickleCellCommunity is at your service. 

This is a place for moms with children with sickle cell or mothers with sickle cell who are actively trying to conceive. This is a judgement free zone where we can talk and share about the victories and achievements and sometimes pitfalls of our type of motherhood! 

This is a group for women only - mothers who have Sickle Cell, mothers of children who have Sickle Cell, women with Sickle Cell who are actively trying to conceive. Grandparents and/or legal guardians of children with Sickle Cell are also welcome. (If you do not fit into any of these categories but still feel like this group can help you please contact the admin/creator of the group - Shamir Jubert-Kimbro.

This group was created for members and families to post prayer requests each day. 

This is a judge free, drama free support group for Sickle Cell Anemia. We are here to give support and a helping hand when you want to vent about the hardships of Sickle Cell Disease or when you just need a laugh from people who understands you the most.

CJ Sanders started this group after finding that there are groups out there that were more judging than understanding. He set to make a difference and ensure that there’s a group that’s all about LOVE. If you ever feel alone let someone know here, please. In this group, we ALL come together, even if it’s just needing someone to talk to. We are all going through the same thing here.  Sometimes friends, spouses, family, doctors, bosses, etc just don’t understand. We will. We know exactly what we are going through.