The Republicans claim no one with a pre-existing condition will be denied coverage in their newly passed House bill, the American Health Care Act (AHCA). But what is a pre-existing condition anyway, and why is everyone so worried about it?

When the Patient Protection and Affordable Care Act (PPACA, better known as Obamacare) was passed in 2010 and fully implemented in 2014, one of the provisions required that no health plan sold to individuals or group
s could refuse to cover someone because of their “health status” (i.e. whether they had a medical condition that preceded enrolling in their insurance). By 2014 that was a national standard. Before Obamacare, however, the patchwork of state and insurance regulations allowed each state to define pre-existing condition in its own way (See the Wikipedia description of how states regulated pre-ex before Obamacare). Not only did the list of these conditions vary by state, the maximum waiting period or “exclusion” period before you could get treatment for some these conditions also varied, from 6 months in Massachusetts to 10 years in Indiana. Before Obamacare, along with significant diseases that were considered to be pre-existing like cancer, diabetes and heart disease, there were a variety of fairly minor conditions:

According to the California-based advocacy group Consumer Watchdog, other possible situations falling under pre-existing condition clauses are chronic conditions as acne, hemorrhoids, toenail fungus, allergies, tonsillitis, and bunions, hazardous occupations such as police officer, stunt person, test pilot, circus worker, and firefighter, and pregnancy and/or the intention to adopt.[17]
The insurance market of the time was actually regulated on a state by state basis, meaning that you could be denied coverage for nine months in the state of Washington or an unlimited amount of time in Arizona. Doctors remember it as a terrifying time, many knowing patients who actually died for lack of coverage, contrary to what Rep. Raul Labrador said this weekend when he promised no one dies from lack of health care.

This is the way it was before Obamacare. And this is the way it would be under H.R. 1628, the American Health Care Act, which now goes to the Senate for further consideration:

Retain private market rules, including requirement to guarantee issue coverage; prohibition on pre-existing condition exclusions, requirement to extend dependent coverage to age 26. Modify age rating limit to permit variation of 5:1, unless states adopt different ratios, effective 2018. Retain essential health benefits requirement, with state option to waive. Retain prohibition on health status rating with state option to waive for individual market applicants who have not maintained continuous coverage.
Sounds like the new bill would continue to include Obamacare prohibitions on pre-existing conditions, right? Actually, sort of. The actual language in the bill as amended says:

SEC. 137. CONSTRUCTIONS. 14 (a) NO GENDER RATING.—Nothing in this Act shall be construed as permitting health insurance issuers to discriminate in rates for health insurance coverage by gender. 17 (b) NO LIMITING ACCESS TO COVERAGE FOR INDIVIDUALS WITH PREEXISTING CONDITIONS.—Nothing in this Act shall be construed as permitting health insurance issuers to limit access to health coverage for individuals with preexisting conditions.
There is a huge amount of room for states to interpret this language. And while there is lots of technical and detailed language about how it would actually be implemented, probably the most important difference between the AHCA and the ACA is that insurers could charge MORE to cover people with pre-existing conditions if they have not had continuous coverage for at least 63 days in the past year. That isn’t such a long period of time. You might think you have coverage, but you forgot to pay a premium last month and then you got busy and forgot this month. OR, you found you couldn’t afford your premiums so you stopped paying. OR, you lost your job, thought you had COBRA but ended up with

If you are discharged before you're ready: This is a big concern for many patients because insurers balk at long hospital stays. Talk to the hospital discharge planner (often a social worker) if you don't think you're medically ready to leave the hospital. The discharge planner will take your concerns to the doctor who makes this decision.

If you are covered by Medicare or by a Medicare managed care plan, you can file an appeal about a discharge while you are still in the hospital. You should get a form from the hospital titled "An Important Message from Medicare," which explains how to appeal a hospital discharge decision. Appeals are free and generally resolved in 2 to 3 days. The hospital cannot discharge you until the appeal is completed.

DEAD ASS SERIOUS

So you telling me that these BUSTED NURSES can get off Scott free! !

*Nurses can avoid arrest for stealing drugs at work*
LINDSAY PETERSON: At first, the Jacksonville nurse denied the charges, but eventually, under police questioning, she admitted she had stolen oxycodone from patient supplies. She was charged with trafficking. Less than four months later, a hospital near Panama City found sign after sign that a nurse was stealing patients' oxycodone and other drugs. At least one patient didn't get pain medication, reports show. But no one called police - or the Board of Nursing. Instead, the hospital referred her to a confidential drug program.
Whether a nurse who steals drugs goes to jail or stays at work remains an unsettled question in Florida. Some in law enforcement decry the rules that allow medical professionals to escape prosecution and public disclosure in drug cases. Nurse advocates respond that treatment brings better results, allowing nurses to resume work vital to their communities. "It really depends on what area you're in," said Clay County sheriff's Lt. Barry Abramowitz, president of the Florida chapter of the National Association of Drug Diversion Investigators. In Jacksonville and north central Florida, "we have very, very proactive law enforcement pill squads," Abramowitz said. Other agencies aren't as aggressive toward health care professionals who steal from their workplaces, he said. "They may not recognize this as a problem." "That's wrong," said state Sen. Mike Fasano, a New Port Richey Republican. "If you steal, especially if you are in the medical field, the state needs to know. At a minimum, there should be a report to law enforcement." But a lawyer for the Florida Nurses Association cautions that a police report could end a nurse's career. "The law is very unforgiving" of drug offenses by medical professionals, said Cynthia Mikos, a lawyer based in Tampa. "This is a disease," Mikos said. "Don't we want to give them an opportunity to be treated?" No one knows how many health workers in Florida are caught stealing drugs from hospitals, doctors' offices and nursing homes where they work. The state Department of Health doesn't track this. But a Tampa Tribune analysis shows nearly two out of three disciplinary actions against Tampa Bay area nurses by the state Board of Nursing were for drug or alcohol offenses. Of 255 substance-abuse reports to the board in the past five years, about a third involved stealing drugs meant for patients, an offense known as "diversion." Many of the other reports lacked details, so the number could be higher. The confidential treatment program, known as the Intervention Program for Nurses, reported that statewide about a third of its 3,400 referrals in the past three years were diversion cases. One reason numbers are hard to come by is that Florida has no system for reporting health care workers who steal drugs from their workplaces. Instead, when a health care center detects a drug theft, it faces choices. Fire the worker. Alert the police. Report the worker to the state Board of Nursing. Or refer the worker to the intervention program. IPN, a private, nonprofit group that contracts with the state Department of Health, began 25 years ago to get nurses drug treatment rather than punishment for their addictions. An employer who suspects a nurse is stealing drugs or using drugs or alcohol can refer the nurse to IPN instead of taking any other action. Most nurses are referred to IPN because of "impairment in the workplace, forgery, diversion (theft) of drugs, or the use of illegal substances," the IPN Participant Manual says. Avoiding a blotch The focus is on getting nurses back to work without a blotch on their records. Thousands of nurses with drug problems have completed rehabilitation through IPN, returned to their jobs and never had a problem again, IPN officials say. Most nurses in the program are required to go through drug treatment and psychiatric evaluation before taking care of patients again. They must tell their employers they are in IPN, though this won't turn up on a state license search unless the nurse has been asked to "voluntarily withdraw" from practice, which comes only after a nurse has relapsed at least twice. After going back to work, nurses in IPN must submit to random drug tests and attend meetings to show they're making progress. Before IPN and a similar program for other health workers, known as the Professionals Referral Network, people who suspected colleagues of drug use kept it quiet. They didn't want them to lose their licenses, IPN officials say. Now they're more likely to tell. "IPN and PRN are in place to PROTECT THE PUBLIC by capturing as many at risk practitioners as possible and MONITORING in order to PROTECT CONSUMER," IPN officials said in a written response to a reporter's questions. It doesn't always work. Repeat offenders The Tampa Tribune recently wrote about a St. Petersburg nurse anesthetist in IPN, Ken Matsko, who was allowed to go back to work with a license that appeared clear after he had stolen the narcotic fentanyl from the surgery center where he worked. He went through treatment and quit using, but started again, state disciplinary records show. While working at a cosmetic surgery center, he rigged up a system that enabled him to inject himself with the narcotic propofol while patients were being sedated. Several nurses who have come into IPN under suspicion of theft steal drugs again while under IPN's protection, state disciplinary records show. Here are examples: • A nurse from Valrico, Diane Remel, went to work at Shands in Gainesville in 2007 and Brandon Regional Hospital in 2008 without reporting she was in IPN. She was fired from both jobs because it was suspected she was stealing drugs. Her relapses didn't come to light until she ended up in a drug detox center later in 2008. • A nurse in IPN, Kim Hudgins, was fired from Naples Community Hospital in 2008 after she was seen entering a bathroom with a bag of the sedative Versed, and a used syringe was found in the room afterward. Six months later, while still in IPN with a clear record, she was suspended from Physicians Regional Medical Center after a co-worker saw her fill a syringe from a patient's bag containing the narcotic fentanyl and enter a bathroom. • Another Naples nurse, Kathy Major, was fired from Physicians Regional in early 2009 when she removed 34 doses of the sleeping pill Restoril without documentation. But she wasn't reported to the board until several months later after she failed at least two drug tests. The state Department of Health doesn't track IPN relapses or drug theft reports. That infuriates Alberto Moscara, who works for a Texas-based pharmacy company that provides services to Memorial Hospital in Tampa. "My job is to flag the discrepancies," Moscara said. But it's so frustrating. I do my job, and I look later and see their licenses are still clear." He notices six or so drug theft cases a year and says he thinks most of the nurses are referred to IPN. "I think they know that if they can jump to IPN, they can somehow evade prosecution," he said. All these nurses may not need to go to jail, he said, but he wants to see more public accountability. "Every time they steal, they're breaking their oath. That goes totally against what I think we're here for," he said. Moscara wants to see the law speak directly to the consequences of stealing drugs from a workplace, with a special focus on nurses whose actions deny a patient pain relief or involve fraud. "The law is not specific as to what will happen," Moscara said. "No one is afraid." Sen. Fasano said he has talked to many health care professionals who share Moscara's frustrations. He plans to meet with state health officials to discuss how to deal with workplace drug theft. "Certainly I want nurses and others getting the help they need," Fasano said. "But we don't want people using the program to avoid being charged with a crime." The problem, said Mikos, the lawyer, is that the law bars nurses from practice if they are found guilty or plead no contest to a felony drug charge. It can mean the end of a career that might be saved through rehabilitation. In some cases, nurses have been allowed to go through pretrial intervention and avoid conviction. A Jacksonville nurse arrested last year, Amy Hubbard Dukes, took that route - though she also voluntarily gave up her license. In other cases, pretrial intervention means the nurse will be monitored by the criminal justice system and IPN at the same time. Some state attorneys won't go along with that, Mikos said. They want convictions. Fasano said he doesn't want to destroy the careers of nurses who could benefit from rehabilitation. But he also wants more safeguards and accountability. "If someone is an addict and using drugs, I don't want them working in a hospital," he said. "At the least we need to have records."

In sickle cell disease, the red blood cells become distorted and look C-shaped, like a sickle. Sickle cells die early, which leads to anemia. Also, these sickle-shaped blood cells tend to get stuck in narrow blood vessels and clog blood flow. This can cause severe pain and organ damage. People with sickle cell disease are susceptible to certain bacterial infections.

sickleCellEvent_illustration

Students with sickle cell disease may:

  • need to go to the school nurse's office and take medication to help manage pain
  • need to drink water throughout the day to avoid dehydration, which increases sickling of red blood cells
  • be tired in class and need occasional rests from classroom activities
  • need to have classroom air temperature adjusted to avoid becoming overheated or too cold, which can trigger episodes of pain
  • experience symptoms that require immediate medical attention, such as severe pain, chest pain, breathing difficulties, fever, jaundice or paleness, extreme fatigue, swelling of hands and feet, severe headaches, seizures, and other neurologic symptoms (such as sudden vision changes, slurred speech, weakness or inability to move any part of the body, or loss of consciousness)

What Teachers Can Do

Students with sickle cell disease may miss class time or be absent for doctor visits or hospital stays. Give these students special consideration regarding missed instruction, assignments, and testing.

Chronic fatigue or pain can make some students appear that they are not motivated to learn. Knowing the student well can help you make a proper assessment.

Kids and teens with sickle cell disease may not be able to play contact sports or participate in strenuous exercise — check with their parents. Otherwise, encourage your students with sickle cell disease to participate in moderate physical exercise and other school activities.

Allow your student to carry a bottle of water and take bathroom breaks. Allow breaks from instruction and activities when necessary. Avoid outdoor activities when it's very hot or very cold.

Have a plan in place in case your students experience any symptoms that require immediate medical attention.

 

 

WE ARE GETTING THERE YALL!! SLOW AND STEADY IS OUR REALITY SO EMBRACE IT AND KEEP PUSHING

Calgary doctors develop new stem-cell transplant procedure to cure children with sickle cell anemia

Cardelia Fox, centre, with her sister Tamika Allen and Dr. Greg Guilcher
 at the Children's Hospital on Monday June 6, 2016. Cardelia suffered from sickle cell anemia and was treated by Dr. Guilcher with stem cells from her sister Tamika.

 

 

When she was just six months old, Cardelia Fox had a stroke — the first of three she would experience as a child.

At the time, doctors told her parents she wouldn’t live past five because she suffered from sickle cell anemia, a genetic blood disorder in which abnormal sickle-shaped red blood cells hinder the flow of oxygen through the body. 

Now 19, the bubbly Calgarian of Jamaican descent is cured of the disease thanks to a new stem-cell transplant procedure being spearheaded among children by the Alberta Children’s Hospital with potentially global implications. 

“It’s really a breakthrough,” said Anna Banerji, a pediatrician and professor at the University of Toronto. “This could make a huge difference in the life of a child.” 

 

To date, the hospital has successfully cured sickle cell anemia in nine children with a new protocol for stem-cell transplants, which involves a bone marrow donation from a sibling who is a 100 per cent match, but does not have sickle cell anemia. The odds a patient has such a sibling are one in five.

Stem-cell transplants for children and teenagers with sickle cell anemia have grown increasingly common in recent years and are carried out in many hospitals in the U.S. and Europe, said George Buchanan, professor of pediatrics at the University of Texas Southwestern Medical Centre.

But Alberta Children’s approach is unique because it is likely the first place to conduct transplants on children that don’t involve chemotherapy, said Gregory Guilcher, a pediatric oncologist who leads the sickle cell blood and marrow transplant program at Alberta Children’s Hospital, during an interview at a media briefing on Monday. 

Drawing on a treatment used successfully on adults in the U.S., sick children at the hospital are instead given medications that intensively suppress their immune system and a low dose of radiation in the week before the transplant.

 This “lighter” treatment is less risky than chemotherapy, which can come at the cost of infertility and is more likely to cause graft-versus-host disease in which the transplanted bone marrow creates serious complications by rejecting the patient’s body, Guilcher explained. 

“We basically knock out the immune system and we deplete the bone marrow blood cells with the radiation, and this allows space and an environment that can allow a person to accept the new blood system without destroying it right away,” said Guilcher, who has received calls from people around the world who are interested in the approach. 

For her part, Fox said that the transplant she received from her elder sister when she was 17 transformed her into a “whole new person.” 

“The greatest thing is to not have those people that would make her ill. 

Prior to being cured, Fox miserably looked ahead to a life filled with monthly blood transfusions that involved spending a whole day at the hospital. Though a necessary treatment, the transfusions left her exhausted, pulled her away from school and made her upset, said Fox.

She had the words “set free” tattooed on her forearm on her 19th birthday to symbolize a new chapter in her life. 

Only a handful of the millions who suffer from sickle cell anemia and other hemoglobin disorders can be as lucky as Fox. 

The majority with sickle cell anemia, which is caused by a gene that is protective against malaria, are in poor countries in Africa, though it also affects those of Middle Eastern, Indian and Mediterranean descent. 

“For 95% of the world where people with sickle cell anemia live, this not an option at all right now,” said Buchanan, noting that stem cell transplants often cost US$100,000 to $150,000. 

Guilcher has ambitions to change that in partnership with doctors in Nairobi, who have extensive experience that can also help doctors in Canada. 

“The number of kids they see with sickle cell disease is huge. There are thousands even in Nairobi slums,” said Guilcher, noting that many go untreated. 

His team hopes to increase access to the cure by working on a teaching curriculum to train more East African doctors in transplant techniques and by establishing an East African bone marrow transplant centre in five to ten years. 

“We hope that some day everyone with sickle cell disease will have the option of a cure,” he said

be there anymore to tell me things I cannot do,” said Fox, whose rebellious streak prompted her to do forbidden things, such as drinking a Jamaican grapefruit drink and intense exercise

YESSS TEAMSICKLECELL... WE HAVE A CASE! SEVERAL CASES AT THAT!

FUNNY THING ABOUT THIS AWARENESS/ADVOCACY BUSINESS IS (MY OPINION) THREATEN THEIR $$ THEY WILL MIRACULOUSLY BEGIN TO LISTEN!

Do I have a medical malpractice case?

Under the law in all states, a plaintiff in a medical malpractice or negligence case must be able to prove three issues. First, that there was negligence by one or more healthcare providers involving the patient's care. Second, that this negligence was the cause of the injury or death. Third, the plaintiff must prove damages that are the result of negligence.

Proof of negligence is dependent on the facts of the case and on expert testimony to show that medical care was below an acceptable level. Most of the evidence that is necessary to show the facts of the case will be found in the medical records. This evidence is crucial in allowing medical experts to base their opinions about the standard of medical care provided in each specific case. Thus, the first step in evaluating any medical malpractice case is a critical review of the medical records to determine if you have a valid malpractice lawsuit.

Most attorneys must rely on reviews by physicians who are hired to review the medical records and offer opinions about whether there was any negligence in care that caused an injury or death. Unfortunately, such hired consultants may offer opinions that are not supportable in court, or they may cause the attorney to reject certain valid claims so MAKE SURE THE LAWYER YOU HAVE KNOWS HOW TO DEFEND YOU AGAINST THIS!

#NEED2KNO INFO ON HOW TO WIN YOUR DISABILITY CLAIMS!!

Knowing how the Social Security disability system works is key in getting disability benefits, as is knowing how to grease the wheels. Here are a few tips on keeping your claim moving properly through the system and making sure the right people at Social Security have the information they need to make a disability decision.

Smith Agyingi, a fourth-year biomedical sciences student, will showcase his research on sickle cell comorbidities at the annual Experimental Biology Conference April 2-6 in San Diego. Agyingi, a native of Cameroon, West Africa, who moved to Rochester six years ago, has been testing how single nucleotide polymorphisms in the toll-interacting protein gene affect sickle cell comorbidities, complications and diseases that arise from sickle cell disease. In addition to his research, he serves as a mentor for RIT’s Collegiate Science and Technology Entry Program and plays piano and intramural soccer.

Question: What brought you to RIT?
Answer: Two major reasons why I chose RIT were that they offered me the best financial aid package of all the schools I wanted to attend and most importantly, they were one in very few well recognized schools in New York state with an exclusive major in biomedical sciences.

Q: Why did you choose your major?
A: I knew for sure I wanted to go to medical school after I graduate and the course requirements of this major exposes you not just to the contemporary biology and chemistry classes but also to some medical oriented classes like immunology, endocrinology and parasitology. I believe this will better prepare me for my career ahead.

Q: What made you decide to conduct research on sickle cell comorbidities?
A: I am African American, and sickle cell disease affects a large number of people from my ethnic group. The science world isn’t giving as much attention to this disease as it deserves. As if single sickle cell disease is not enough, this sickle cell polymorphism fosters susceptibility to several other complications including infectious diseases, which exacerbates the severity of disease pathophysiology in sickle cell patients. My hope is that the little knowledge I can add concerning the workings of this debilitating disease may help people understand why there is a poor immune response in patients and clarify infectious disease susceptibility.

Q: How did you conduct the research?
A: We thought that the susceptibility to several other infectious diseases, known as comorbidities, in patients with sickle cell disease was brought about by a polymorphism/mutation of the toll-interacting protein gene, which disrupts proper immune response. We used primarily two laboratory methods genotyping via polymerase chain reaction and the restriction fragment length polymorphism to analyze the genomic DNA of the control group and patients with sickle cell disease from Africa and the United States. We tested for the genetic diversity and haplotype frequency of this polymorphism.

Q: How has Professor Bolaji Thomas helped you with the research and influenced your education at RIT?
A: Dr. Thomas hasn’t only been very instrumental in my research and educational goals but also in helping me grow as an individual and understand life better. I would say he has been a great mentor in several aspects of my life. Quite honestly on several occasions during my research, my findings didn’t make any sense to me, which was always the perfect time to quit. On such occasions, he would give me those talks about the reality of life and how research can get a little frustrating sometimes. For some reason, he always seemed to put sense into those “not so great results” and he always had a way to make those results make sense. This didn’t just apply to research but with everything else.

Q: What are your findings?
A: Sickle cell disease comorbidities and high mortality are a huge burden for patients in Africa. We found that a “relatively significant” frequency of toll-interacting protein polymorphism in disease samples compared to controls. This by no means is the cause of high comorbidity rates in patients but we believe a major contributory factor. This is an extension of our previous work to examine the role of CD209 promoter gene and toll-like receptor polymorphisms among and between population and disease groups. More work in larger sample sizes needs to be done to confirm these findings.

Q: What is the next step in the research?
A: So far, from our research, we are certain there is a relationship between SCD comorbidities and the toll-interacting protein gene polymorphism. To follow up on these results, we will try to establish a clear mechanism through which these sickle cell comorbidities take hold, by specifically examining urinary tract infection and intestinal nematodes in both study groups.

Q: What does the opportunity to present your research at the Experimental Biology Conference mean to you?
A: It is an honor for my research to be deemed worthy and important enough to be accepted at a conference of that caliber. It is my hope that this work will encourage many more researchers to look into this neglected disease, which is affecting a great number of people worldwide.

Q: What do you hope to learn at the conference?
A: One thing I hope to achieve at this conference is to network with other researchers from a variety of institutions who share similar interests, both students and professionals. Hopefully, I may be able to find a laboratory where I could conduct research during my gap year or make new acquaintances that may be very resourceful in helping achieve my goals. Also this will serve a great opportunity to explore new scientific knowledge and career advancement opportunities and other resources that may be of interest to me now or a few years down the road.

Q: After graduation, what are your plans?
A: After I graduate in May, I plan on taking a year off before starting medical school in 2017. During that gap year, I will take my MCAT, put out applications to medical schools and do some more research, hopefully a continuation of my previous research and work.

CONGRATULATIONS!!!! CONGRATULATIONS!! OUR SISTER SOLDIER DESERVES THIS!!!

Detroit Sickle Cell Pediatrician receives National appointment

Wanda Whitten-Shurney will serve on an NIH board addressing Sickle Cell Disease in the US

With 29 years of work and advocacy as a pediatrician specializing in treating Detroit-area children with sickle cell disease, Wanda Whitten-Shurney of Children’s Hospital of Michigan at Detroit Medical Center will have a role in addressing national policy around Sickle Cell Disease.

The National Heart, Lung and Blood Institute, a branch of the National Institute of Health, appointed Whitten-Shurney to its Sickle Cell Advisory Committee. The 15-member committee sets goals and policy for the continuing campaign to tackle Sickle Cell Disease, and includes a number of distinguished physicians from across the country.

Whitten-Shurney is a second-generation pediatrician focusing on Sickle Cell Disease. Her father, Dr. Charles Whitten, also was a Children’s Hospital of Michigan pediatrician and a Wayne State University School of Medicine professor.

“As a physician who has spent most of her medical career helping to treat sickle cell patients, I am greatly encouraged and energized by this appointment to the NHLBI advisory committee,” Whitten-Shurney says in a press release. “Thanks to that appointment, I will now have a seat at the [policy-making] table– and a voice in helping to shape research goals for my patients.”

Whitten-Shurney says one of her first priorities as a member of the National Heart, Lung and Blood Institute Sickle Cell Advisory Committee will be to advocate for better communication and better educational outreach to the minority communities who are most often affected by Sickle Cell Disease.

“I’m quite passionate about that aspect – and I will continue to be inspired by my father’s pioneering role in this area once I join the committee and get to work.”

Whitten-Shurney will be formally installed as a member of the committee in June.

LAZY? DO YOU KNOW BEING NORMAL CAN RISK MY LIFE?
DO YOU THINK THAT I WANT TO BE BREATHLESS WHEN GOING TO THE RESTROOM? DO YOU THINK THAT I WANT TO PASS OUT IN FRONT OF MY FAMILY BC OF THE EFFECTS OF THIS ILLNESS? DO YOU THINK THAT I WANT TO FEEL DRAINED WHEN I DID NOT MOVE A MUSCLE ALL DAY? IT MAY LOOK LIKE LAZINESS IF YOU ARE ON THE OUTSIDE LOOKING IN BUT PLZ BELIEVE THAT IT IS SO FAR FROM MY REALITY. I AT TIMES WISH THAT IT WAS LAZINESS BC AT LEAST BEING LAZY WARRANTS YOU THE ABILITY TO GET UP AND GO WHENEVER YOU ARE READY...I CANT DO THAT.

I AM...
A SICKLE CELL SOLDIER! FIGHTING SO HARD TO STAY ALIVE AND COMFORTABLE IS MY GOAL EVERY DAY. ANY OTHER ACHIEVEMENTS ARE JUST BONUS BLESSINGS. #ONELOVE

IF U RESPECT WHAT I AM DOING HERE...PRESS PLAY 2 FEEL WHY!

  • SickleCell Roundtable with SHAWNSTESTIMONY

    Roundtable Discussion EVERY month about topics that we back away from!

  • Soldiers In Training with Duchess Joyce El

    This is ALLL about OUR BABIES! NO TOPIC will be left unturned! Trying to get them ready for the big bad world of being an adult with this illness!

NEW SHOW ON BLOG TALK RADIO BY SHAWNSTESTIMONY!

We are looking for music/poetry from those in the SickleCell community that we can use on the NEW RADIO SHOW that will premier SOON!!!!!! Plz submit if you are i interested!! shawnstestimony@gmail.com

🙌🙌🙌🙌🙌🙌🙌🙌🙌

#GenoAtkins is #TeamSickleCell and an alumni of #MarkRicht. I love that the #NFL is taking this illness serious because it's no joke. The term "Just Trait" needs to be eradicated from the vocabulary of those who should know better BC it can strike you down at times even quicker than the disease. It was beautiful hearing on #MONDAYNIGHTFOOTBALL that there isn't much information about it's effects in high altitudes! NOW...Y'ALL READY TO ASK WHY...LET'S GET THIS TRENDING!!!
WHY...THE NUMBER ONE ILLNESS THAT AFFECTS THE BLOOD IS NOT GIVEN A CARE AT ALL?
WHY...THE FUNDING FOR RESIDENTS TO FIND OUT ANSWERS IS NOTHING?
WHY...THEY WANT TO CUT THAT?? #COMEWITHIT YALL... #ONELOVE
SHAWNSTESTIMONY.COM

#sicklecell
#sicklecellawareness

  • Nita Thompson

  • Roxanne Sawyerr

#WontHeDoIt...Find out how mom and Princess doing!

I'm doing better..there's some swelling on
my right side so now we have to figure out
what that is. The baby is doing fine. Her
name is Susie Ann Marie Edwards. Her
name is of all 3 of her grannys. She's such
a blessing.
I love u sis. Thanks again!

Tarsha

The Richt Family is a part of #TeamSCD!! READ ...SHARE!

Richt strong on charity fundraising

Georgia coach Mark Richt talks with reporters during Southeastern Conference Football Medoover, Ala.

He’s traveled to impoverished countries on mission trips, worked with the poor in and around Georgia and even sold his lake house recently in order to support a charity that aids impoverished people around the world. He’s also been a vocal supporter of many causes, including increasing awareness for the dangers of sickle cell anemia — a disease that affects the blood cells.

Richt and several UGA players appeared in an NCAA ad about the new recommendation that schools test all athletes for sickle cell trait in order to detect the disease so coaches can properly handle athletes with the disease.

It’s a cause that hits close to home for Richt.

“Our No. 2 son (David) has a sickle-cell trait,” Richt said. “Doing things on the soccer field, it can get real hot, they can do a lot of running. Compared to our first son, he struggled a lot more.”

Sickle cell anemia causes shortness of breath and headaches most commonly, and it can be deadly if those with the disease are pushed too hard.

Ereck Plancher, the Central Florida football player who died during conditioning drills in 2008, had the disease and an expert testified recently in a wrongful death lawsuit filed by his family that sickle cell anemia was directly responsible for his death. Seven other collegiate football player deaths during the past 15 years also have been attributed to the disease.

Learning how to balance the need for intense condition in football against the potential risks of the disease is important. It’s why Richt and others are devoting so much time to getting the message out.

“The hardest part about that is … (a player) doesn’t want to be set apart where his teammates can bust his chops for (not) doing what everybody else does,” Richt said. “The reality is, we got to put the pride aside and we got to use good common sense with these guys because it is a real thing and it can be deadly.”

Congrats to the #Falcons and #TeamSCD's own #TEVINCOLEMAN!!!! TO READ MORE ABOUT HIM CLICK THE SYCKEST ATHLETE PAGE ON THIS SITE!!

AM I REACHING?

PLZ READ THEN SHARE!
Am I getting on your nerves yet? Well just imagine if I wasn't sick! It would probably be way worse than I am doing now! Okay let's get to it.. #WEALLBLEEDRED. SICKLECELL has no #RACE because #BLOODISBLOOD and this illness is a blood disorder! So...if you have blood #gettested please! You getting tested will help in getting funding 4 research that is truly needed! Research and funding goes hand in hand. We want the appropriate statistics because we all know this is a numbers game.. so I just want the correct numbers!

SIGN UP FOR THE TRIALS AND STUDIES BECAUSE IT'S AN IMPORTANT PART IN OUR PLAN TO STRENGTHEN THE COMMUNITY! WE NEED TO BE PHYSICALLY PRESENT IN ANYTHING THAT IS RELATED TO SICKLE CELL! NO MORE...WELL SHE/HE SAID! WE GOTTA HAVE OUR EYES ON...EVERYTHING (I KNOW Y'ALL FEELING ME: THEY CAN'T JUST TELL US ANY OLD THING ANYMORE) ...FROM THE MONEY TO THE SCIENCE TO THE BUSINESS AND THE AWARENESS ETC ETC. ..THIS COMMUNITY HAS PPL THAT CAN BE DELEGATED TO EACH NOOK AND CRANNY! We can do this! TAKE CONTROL OF EVERYTHING! MY LONGTIME GOAL IS WE DON'T HAVE TO DEPEND ON THE GOVERNMENT BECAUSE WE GOT THIS (ALLLL OF IT) ....AM I REACHING!?