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URGENT! Sickle Cell Anemia...Please Share All That You Know!

Personalized Stem Cells Treat Sickle Cell Anemia in Mice

Scientists Convert a Mouse's Skin Cell to a Stem Cell and Treat its Sickle Cell Anemia

by Dr. Barry Starr, Stanford University

December 14, 2007
Stem cell research moves fast! A few weeks ago the news
was that scientists had created human embryonic stem (ES) cells without
destroying an embryo. Now a group of scientists has used this type of
cell to treat and possibly cure sickle cell anemia in mice.

But don't look for a cure in humans this year. The procedure works
pretty well in mice but some of the steps haven't been optimized for
people yet.

Some of the steps also come with the unacceptable risk of cancer. This
will need to be worked out before this research can be translated to
people. But it is definitely a huge first step towards curing sickle
cell anemia.

Reported April 24, 2009

Opening Doors to a Sickle Cell Cure

ST. LOUIS (Ivanhoe Newswire) -- Sickle cell anemia is one of the most common genetic diseases in the United States, affecting 70,000 Americans. The only cure for the disease is a stem cell transplant, but
the perfect donor is hard to find. A new type of transplant is opening
to door to the thousands of children who don't have a donor in their
family

For 14-year-old Albert Pinckney, the best experiences in life are on wheels.

"I like going fast," Pinckney told Ivanhoe.

But having sickle cell anemia forced him to grow up too fast. Pinckney missed all of the

first grade because of complications with his disease.

"My spleen, gall bladder, tonsils, adenoids -- I've had all those removed," Pinckney said.

Unfortunately, Pinckney's story isn't unusual among kids with severe sickle cell. The

disease causes abnormally shaped blood cells that have trouble passing through vessels. Patients can get blood transfusions to replace the abnormal cells, but the fix is only temporary.

"We know that we have helped them for a short while, and then they are going to be back again," Shalini Shenoy, M.D., Director of the Bone Marrow Transplant Unit at St. Louis Children's Hospital in St. Louis,
Mo., told Ivanhoe. The only cure is a marrow or blood stem cell transplant, but until now, this has only

taken place between family members. A new study is allowing patients to receive transplants from unrelated donors.

"The idea is to try to make transplants available to different groups of patients," Dr. Shenoy said.

The study is also trying to ease the long-term effects of the chemotherapy needed before the procedure. Lower doses could prevent organ damage, ovarian failure and sterility.

Although it's been a struggle, Pinckney's disease has made him who he is.

"It's really affected me and helped me to be a more mentally strong kid than most," Pinckney said. A strong kid whose cure may be around the corner.

The stem cells used in the study come from the National Marrow Donor Program and cord blood registries across the country. Another possible cure for sickle cell disease is gene therapy, which has only been tested in mice.

More Information

Click here for additional research on Opening Doors to a Sickle Cell Cure
Click here for Ivanhoe's full-length interview with Dr. Shenoy

If this story or any other Ivanhoe story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Melissa Medalie at mmedalie@ivanhoe.com

FOR MORE INFORMATION, PLEASE CONTACT:

Jackie Ferman-Grothe

St. Louis Children's Hospital (314) 286-0304
The Future of Sickle Cell Anemia Treatment
Scientists have learned a great deal about sickle cell anemia during the past 30 years--what causes it, how it affects the
patient, and how to treat some of the complications. They also
have begun to have success in developing drugs that will prevent
the symptoms of sickle cell anemia and procedures that should
ultimately provide a cure.

About SCCF

The Sickle Cell Cure Foundation, Inc. (SCCF) is a nonprofit coorporation registered in the State of Oklahoma.

Help For Sickle Cell Anemia

If you are suffering from sickle cell anemia, what you’re about to read in this report could be the beginning of blessed relief from debilitating pain.

Gene Therapy
Gene therapy is being studied as a possible treatment for sickle cell
anemia. Researchers are looking to see whether a normal gene can be
planted in the bone marrow of a person with sickle cell anemia, and
thus cause the body to produce normal red blood cells. Researchers also are studying the possibility of treatment to “turn off” the sickle cell gene or “turn on” a gene that makes red blood cells behave normally.

New Medicines
New medicines being studied are:
- Butyric acid. This is a food additive that may increase normal hemoglobin in the blood.
-
Clotrimazole. This is used now to treat fungus infections. This medicine helps prevent the loss of water from a red blood cell and can keep the cell from turning into a sickle cell.
-
Nitric oxide. This may make sickle cells less sticky and keep blood vessels open. People with sickle cell anemia have low levels of nitric acid in their blood.

Hunting Down a Cure for Sickle Cell Disease

Excerpt By Janice Billingsley, HealthScoutNews (HealthScoutNews) -- While a cure remains elusive, victims of sickle cell anemia are living
longer, healthier lives.

The most common inherited blood disease in the United States, sickle

cell anemia affects about 80,000 Americans, primarily blacks. Another 2 million Americans have the defective gene that causes the disorder, making them potential carriers.

Thanks to improvements in diagnosis, treatment and research, half of those with the condition are now more than 50 years old. Until recently, people with sickle cell rarely survived childhood, according to the National Human
Genome Research Institute.

"I have five adult patients, one more than 60 years old, who watch out for themselves. They are good, cooperative patients who make sure they optimize their care," says Dr. Kenneth Algazy, a clinical associate
professor of medicine at the University of Pennsylvania School
of Medicine.

Stem Cells Cure Boys Sickle Cell Anemia

By Bob Ellis on

May 28th, 2009

Sickle cells (Credit: National Human Genome Research Institute)

No, it wasn’t embryonic stem cell therapy that cured Joseph Davis Jr.’s sickle cell anemia. But from the “mainstream” media’s hype of embryonic stem cell research, you probably guessed it was.

While there is still not a single successful therapy derived from embryonic stem cell (ESC) research, the case of Joseph Davis Jr. is yet another success from a stem cell therapy that, unlike ESC, does not destroy innocent human life.

OneNewsNow ran an article today on the story of little Joseph Davis Jr., son of Joe and Darlene Davis from Texas ,

who was born with sickle cell anemia, an autosomal recessive genetic disorder. Because of this disorder, little Joe ran high fevers, experienced swelling of the hands and feet, and had to have frequent
blood transfusions.

But when Joe Sr. and Darlene found they were pregnant with another child, they did some checking and found that their next child was a perfect match with Joe Jr. to be able to use

stem cells from baby Isaac to treat Joe Jr.’s sickle cell anemia.

From the OneNewsNow article:

“[Cells from] Isaac’s umbilical cord blood, adult stem cells, [were] going to save my son’s life, and that adult stem cell got my son cured today. He is healed,” Darlene adds. “What I’m talking about is no more sickle cell, no more running
to the hospital, no more fevers, no more blood transfusion. He’s a
healthy child today.”

That was back in 2002 when Isaac was born and Joe Jr. was treated using Isaac’s umbilical cord stem cells, and the Joe Jr. is still doing fine.
CitizenLink ran an interview with the Davis family last year in which Darlene said of 8-year-old Joe:

He’s doing great and he’s loving life. When he was little, the doctors told me he would have to take antibiotics every day for the rest of his life. Guess what? He’s not taking anything. And I thank God for that.

The total number of successful therapies using adult stem cells, umbilical cord stem cells and other non-destructive sources is between 70 and 80 now. Therapies include

treatments for meningitis-related limb damage, brain injury, stroke, retina regeneration, heart tissue regeneration, angina, diabetes, bone cancer, nerve regeneration, cerebral palsy, cartilage regeneration, Parkinsons, kidney damage, liver cancer, lupus, multiple sclerosis, and leukemia.

Last year I had the pleasure of meeting Carol Franz while I was in Washington D.C. Carol is an adult stem cell therapy patient and survivor of multiple myeloma cancer, a blood cancer. When I met her, she was energetically hopping into a 10th-floor elevator with her luggage in tow, and she was wearing a neon shirt
which declared she had received adult stem cell therapy. You can read
Carol’s story at her website and see before-and-after pictures of her.

Unfortunately, despite the dozens of successful treatments dereived from benign sources of stem cells, some people insist on destroying innocent human life to harvest stem cells from human embryos. Earlier this year President Barack Obama authorized taxpayer funds for embryonic stem cell research, using our tax dollars
in connection with the destruction of innocent human life.

To some, it doesn’t seem to matter that one line of research is already yielding tremendous results while the other has yet to produce a single useful treatment. It doesn’t seem to matter to some that ESC faces practical hurdles such as tissue rejection (like that seen in organ transplants)
and tumor generation in the recipient, such as those afflicting the
poor Israeli boy treated with fetal stem cells. It seems irrelevant to some that an
innocent human life is destroyed in the harvesting of embryonic stem
cells.

Regardless of all this, they insist that ESC research go forward, and they insist you the taxpayer pay for it–even as some in the “mainstream” media are starting to admit that ESC research just isn’t necessary.

One has to marvel at the irrationality of today’s death culture.

New Therapies Break Sickle Cell’s Painful Grip

A brace of therapies ranging from improved bone marrow transplantation to

stem cell research may finally put sickle cell anemia on the run.

By: David Richardson | March 22, 2009 |
feature photo

Sickle cell anemia, the first genetic disorder recognized by medicine, is still not well understood.

Identified in 1910 by James B. Harrick in Chicago, the disease affects close to 100,000 people in the United States, mostly African American, and millions worldwide. The consequences for patients are devastating.

According to Sophie Lanzkron, director of the Sickle Cell Center for Adults at Johns Hopkins University, 30 percent of sickle cell patients experience pain 90 percent of days. "This is a tough disease; they have intermittent episodes of excruciating pain — they can’t go to college or have careers. Patients spend their lives just trying to manage the pain.”

With no objective measure of the disease, Lanzkron said patients are frequently stigmatized when they seek medical attention — being mistaken for addicts in search of narcotics — and treated with disdain by emergency-room personnel unfamiliar with the disorder.

The physiological consequences of sickle cell anemia include severe damage to organ systems, particularly to the kidneys and lungs, and can reduce life expectancy for those with sickle cell to the mid-40s. Complications include life-threatening infections and stroke — even in young children.

Children who suffer intermittent attacks miss school with predictable consequences for their lives and for their futures. Meanwhile, their caregivers must miss work to tend to them. Added to this are the health-care costs. Sickle cell patients, Lanzkron said, are often “understandably depressed."

“There are so many unmet needs in this patient population,” says Lanzkron, “and I see people come in with horrible complications.” But researchers are targeting the disease with new multidisciplinary approaches with promising results. Combining a novel chemotherapy protocol with a proven bone marrow transplant technique, Robert Brodsky, director of the hematology division at Johns Hopkins University Medicine, announced the cure [see correction below] of an adult sickle cell anemia patient — Pamela Newton of Capitol Heights, Md. And researchers with the National Institutes of Health have developed innovative techniques spanning the spectrum from chemotherapy to irradiation to move step-by-step towards a cure for sickle cell and related disorders.
More than meets the eye

Normal red blood cells are disk-shaped and flexible, explained Lanzkron,
allowing them to squeeze through tiny capillaries to bring oxygen and
nutrients into every part of the body.

In those with sickle cell, their red blood cells contain unusual polymers that intermittently cause the cells to lose their elasticity and lock into a sickle shape, massing and tangling to block blood

vessels and capillaries. That’s where the pain starts. “But we know it’s more complicated than that,” she said. The sickle cells also have a reduced oxygen capacity and shortened life expectancy compared to
normal blood cells, and they seem to have a negative impact on the
blood vessels themselves, “It affects the whole environment.”

“Scientists believe (the) sickle cell trait developed in malarial regions over time through natural selection,” said Lanetta B. Jordan, chief medical officer with the Sickle Cell Disease Association of America. It persists, she says, “because of the survival benefit it confers against malaria.”

Lanzkron elaborated: “People carrying the trait can still get malaria, but they are less likely to die from it.” But, she said, “There is no harm in having the trait,” which is carried by a recessive gene.

However, when two parents have the trait, their offspring each have a one-in-four chance of having sickle-cell disease. Although mostly associated with blacks in the United States, the disorder is also seen among Latinos, Asians and others with Mediterranean or African ancestry.

Aside from the not-always-effective pain medications, only two approved treatments exist for sickle cell, Jordan said — the chemotherapy drug hydroxyurea to ameliorate crises and bone marrow transplant. An Elusive and Risky Cure
Bone marrow transplants have been recognized as a cure for sickle cell for
more than 20 years, but they have always required a perfect tissue
match between the donor and the recipient. Only siblings can meet that
requirement, and even then, the odds are one in four of a perfect
match. However, because sickle cell is hereditary, closely matched
siblings also have a high probability of sharing the disorder. Lanzkron describes a lifesaving operation: “We give the patient agents that knock out the bone marrow; then it’s like getting a
transfusion. We harvest a bit of marrow from the donor and infuse it into the patient.

“The bone marrow cells do the rest. They know where to go.” It sounds deceptively simple, but Lanzkron says that a bone marrow has between a 10 percent to 20 percent mortality rate.

Although the procedure has been used to cure the disease in about 200 patients — all of them children — bone marrow transplant is so problematic in adults that it is rarely attempted except in
life-threatening circumstances.

“It is very difficult for adults to embark on a transplant course because, by that time, they have experienced so many transfusions that finding a match in itself is a challenge,” Jordan explained. Furthermore, in adulthood, mounting complications and decades of organ damage may render patients too fragile to withstand the chemotherapy required to make it work.

Over the past year, important advances have been made both in widening the pool of potential marrow donors and in lowering the risks of bone marrow transplant.

The intensive chemotherapy regimen, employed up until the 1990s to make way for bone marrow transplants, destroys the patient’s native bone marrow so that a graft can take root. But if the graft fails, the patient, with his own marrow obliterated, can no longer produce new blood cells and must be re-transplanted immediately in order to survive.

But this scenario is turning around dramatically thanks to Brodsky's innovative technique developed at Johns Hopkins. Brodsky and his team, who reported the first adult cure in May of last year, took a new approach by utilizing a less toxic chemotherapy regime than customarily used for bone marrow transplants.

It employs just enough chemotherapy to prevent the patient's immune system from rejecting the donated stem cells while preserving as much of the patient's bone marrow as possible. Three days after the bone marrow transplant, doctors dose the patient with the drug cyclophosphamide to kill off the donor’s lymphocytes (white blood cells that attack foreign cells) before they can begin an attack upon the body of their new host. This combination therapy gives the recipient patient's new stem cells a chance to establish themselves in the bone marrow and begin producing healthy
blood cells while a compatible — and home-grown — immune system
develops.

Most significantly, Brodsky said the procedure allows for transplants not only between fully matched siblings, but also between half-matched pairs, expanding the potential donor pool to parents and other relatives. Immunosupressive Advances for Sickle Cell and Related Disorders
Jonathan Powell, a National Institutes of Health research fellow, has been collaborating with Dr. John Tisdale at NIH on a different approach, which shows promise not only for sickle cell, but also for thalassemia, Diamond-Blackfan anemia and other severe congenital blood disorders.

Following Tisdale and Powell’s protocol, the donor receives specialized chemotherapy for five days with injections of G-CSF, an agent that stimulates white blood cell formation, to prepare the marrow for transplantation. The cells, once harvested, are frozen for five months before being infused into the patient. Patients undergo their own course of immune suppressing chemotherapy, and are given a
single dose of full-body radiation to retard the immune system’s
response to the donated stem cells.

According to Powell, 10 of the 11 people with sickle cell anemia who have undergone this procedure have taken well to the grafts. And in both studies, failure is not necessarily of dire consequence.

Javier Bolaños-Meade, assistant professor of oncology at Johns Hopkins, says with the reduced chemotherapy approach used by both NIH and Hopkins, “the worst case scenario is that the transplant doesn’t take — then we’re back to square one and the person ends up still having sickle cell,” but their bone marrow recovers and they can survive to try an alternative therapy.

Powell said NIH’s results have been promising “not in numbers, but in the positive response the patients have had. It shows that we’re on the right track.

“There are no major technical hurdles left. Bone marrow transplant is a way to cure sickle cell — unequivocally.”

In January 2009, NIH’s bone marrow transplant study was expanded to include not only fully matched adults, but also children and half-matched donor/recipient pairs, and recruitment for these new participants is currently under way; likewise for an ongoing study at Hopkins.

Powell says he is exploring collaboration between the NIH study and Brodsky’s research at Hopkins that would draw upon the best of both worlds. “We may end up combining ideas.”

Bolaños-Meade, who led the Hopkins research team, is also confident and says sickle cell shows some of the best results for transplant therapy for any blood disorder. “Given that this is a common condition, if there’s a way to correct the problem, we believe we can have a profound impact.”

*Correction: In an earlier version, we said that Johns Hopkins researcher Robert Brodsky and his colleagues developed "the first-ever cure of an adult sickle cell anemia patient." Dr. Brodsky says that Pamela Newton was cured, but her case is not the first ever adult cure for sickle cell — other adult patients have successfully received bone marrow transplants and been cured. The

approach being developed at Johns Hopkins potentially allows for broader application of bone marrow transplants to cure sickle cell. Brodsky notes that this new technique, used for the first time on Ms.
Newton, was probably the first successful haploidentical bone marrow
transplant for sickle cell — he's unaware of others, but he's not 100
percent certain that there aren't more out there.

Stem Cell Treatment Cures Sickle Cell Anemia Patient!

Posted 23 June, 2008 in

Sickle Cell Anemia |

A little more than a month ago, I wrote about Dr. Bertram Lubin’s successful stem cell treatments of sickle cell ... . Here is one of his success stories. This story is unique because 99% of the time, the patient has to leave the United States and go

abroad to receive repair (adult) stem cell therapy (something I am desperately trying to change!), but in this case, the patient and his family moved to the United States seeking (and finding) a successful
repair stem cell treatment for his sickle cell anemia:

Edna Chang-Vega and her husband left behind good jobs, a comfortable home

and extended family in Panama in the hope of obtaining better treatment for Isaac, who suffered from debilitating sickle cell anemia. Worried about Isaac’s bouts with pneumonia and frequent
hospitalizations, the family moved in with a cousin in Antioch. They
figured someone in the United States could help ease Isaac’s symptoms

“Everybody knows that the United States is a big, big country and they are very advanced in medicine,” Chang-Vega said.

Their sacrifice would succeed beyond anything they could have imagined.

Isaac’s story highlights the international draw of Children’s Hospital Oakland. It

also shows what Dr. Bertram Lubin, president of the hospital’s research institute, hopes to accomplish through its new “global health initiative.”

“What we do here really has impact throughout the world,” Lubin said. “We’re one of a few programs in the United States that’s demonstrated that you can cure children with sickle cell anemia with either a bone-marrow or cord-blood transplantation.”

Click here to read the whole uplifting article


4/12/2009

Research and Treatment for Sickle Cell Anemia

Listent Now

Sickle cell anemia is a disease in which the body makes sickle-shaped, or “C”-shaped, blood cells. This abnormality makes it difficult for the blood to travel through the blood vessels, causing chronic pain and many other health issues. Fortunately, researchers
like Dr. Kim Smith-Whitley are working hard to find a cure. Dr.
Smith-Whitley, Director of the Sickle Cell Center at the Children’s Hospital of Philadelphia,
joins Andrew to discuss the latest news and research for the treatment
of sickle cell anemia. The broadcast takes place live from the 50th
annual American Society of Hematology meeting in San Francisco, California.

Dr. Smith-Whitley begins by talking about the overwhelming number of presentations at the meeting, and what this new research means for patients and families of those affected by sickle cell disease. The
presentation topics at ASH include studies on therapeutic
interventions, studies on survival of individuals with sickle cell
disease and the impact that certain complications have on the quality
of life of patients. Dr. Smith-Whitley goes on to address the risk of
stroke and how stem cell transplantation now provides another option
for patients.

In addition to reporting on the various research studies conducted around the country, Dr. Smith-Whitley goes into detail about genetic testing for sickle cell, the need for families to be aware of disease
in their families and what the risk for their children may be. If you
are searching for late-breaking news in the treatment of sickle cell
anemia, listen to this powerful Patient Power program.



Guests:

Kim Smith-Whitley, M.D.

, Pediatric Hematologist/Oncologist, Children's Hospital of Philadelphia



How to participate


Email questions to: questions@patientpower.info

For more information on upcoming shows and events please visit the Patient Power® calendar.


questions@patientpower.info


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Sara/Peace4 Co-Founder Comment by Sara/Peace4 Co-Founder on June 6, 2009 at 1:23am
My word, I love this child...and although "technically" she is not mine...LITERALLY she is our Gwennie's...it's her grandbaby, her name is T' Niece and she has Sickle Cell Anemia...she's our Peace4 babe...so...we'll help her, right? xoxoxo

Lourdes Pagan Comment by Lourdes Pagan on June 6, 2009 at 1:58am
She is a gorgeous child. These is a lot of material to read,however I'm familiar with Sickle Cells Disease. A co-workers daughter was DX when she was 7y.o. Her spleen and Gal Bladder were removed, and she is under no circumstances play any contact sport of any kind. Including Ice Skating which she loved so much, but because she was not taking seriously her condition she had several set backs. I'm a register Bone Marrow, perhaps that would be a way for some of us to start helping. You do not need to be scare of that needle. There are worst things in life, and God only knows the pain all these people go thru every day. It is so easy to do a Bone Marrow Drive, and painless, just a little needle, think about it ????
GWENNIE J Comment by GWENNIE J on June 6, 2009 at 2:08am

Thank you and I love you Sara! I know alot about Sickle Cell, I did not know how devistating it could be to someone until my son was found to be a carrier and also Ashley T'nieces mom. It takes two people who are carriers to make a baby that has the actuall disease of Sickle Cell Anemia. I have already seen the differences that our baby is going to have to go through and though she is in the beginning of her life, the fact that she has been to the hospital 4 times since January is enough for me. She is running fevers right now and can't seem to shake a viral infection that keeps rearing its ugly head. I know that her parents are very worried for her, and they know they may not have her forever, but that they love her dearly and appreciate her very much. She is a bit spoiled...lol I really wasn't expecting this, but I know you are my family too. The one great thing about T'niece is that she is always smiling and she is so sweet and loving. She is great. Here is my favorite photo of her.
GWENNIE J Comment by GWENNIE J on June 6, 2009 at 2:16am
u>Sickle Cell Disease in Children

What is sickle cell disease?
Sickle cell disease, also called sickle cell anemia, is a hereditary (meaning that children can inherit it from their parents) problem that causes a type of faulty hemoglobin in red blood cells. Hemoglobin carries oxygen in the blood.

Normal red blood cells are disc-shaped and very flexible. In sickle cell disease, some red blood cells can change shape so that they look like sickles or crescent moons. Because of their shape, they don't move well through the smallest blood vessels. This can stop or slow blood flow to parts of the body, causing less oxygen to reach these areas. The sickle cells also die earlier than normal blood cells, which can cause a shortage of red blood cells in the body.




Who gets sickle cell disease?
In the United States, sickle cell disease is most common in people who came from, or whose ancestors came from, Africa, Central America (especially Panama), South America, Caribbean nations, Mediterranean countries, India or Near Eastern countries.


How do people get sickle cell disease?
The type of hemoglobin a person makes depends on what traits are inherited from his or her parents, much like hair or eye color is passed on. To get the hemoglobins that causes sickle cell disease, a child must inherit a sickle cell gene from both parents.

A child who inherits one normal gene from a parent and one sickle cell gene from the other is a "carrier."

A child born to parents who both have the sickle cell trait (but not the disease) has a 25 percent change of getting sickle cell disease. A child born to one parent with the disease and one who has the trait has a 50 percent chance of having sickle cell disease or sickle cell trait.




What happens to red blood cells in sickle cell disease, and what problems can this cause?

Picture 1. Normal red blood cells. When the red blood cells of people who have sickle cell disease don't get enough oxygen, these cells change shape. They become longer and curved. Some people think they look like the blade of a cutting tool called a "sickle." Picture 1 shows normal red blood cells, and picture 2 shows sickle cells.


Sickle cells can get stuck in blood vessels and keep blood from reaching parts of the body. This causes pain and can damage the body's internal organs. Blocked blood vessels in the arms, legs, chest or abdomen can cause strong pain. Children with sickle cell disease might get more infections because their spleen is damaged by sickle cells. (One of the spleen's main jobs is to protect against infection.) When sickle cells block blood flow to organs and cause pain and other problems, this is called a "sickle cell crisis," or a "pain crisis."



Picture 2. Sickle cells Blocked blood vessels in the brain can cause a stroke. This can cause brain cells to die. Strokes affect about one in every 10 children with sickle cell disease.

<
Your doctor can do a special test to see if your child is at risk of a stroke. If your child is two years or older, you should ask your doctor if the test is needed. If the test shows a higher risk of stroke, your doctor will talk with you about the use of regular blood transfusions.

If your child has weakness in an arm or leg, has slurred speech, refuses to walk, or has unusual behavior, it may be a sign of a stroke; take him or her to the doctor right away.




How can my doctor tell if my baby has sickle cell disease?
If you are at risk because of your family history or ethnic group, ask your doctor to check you and your sexual partner for sickle cell trait or disease before you get pregnant. Then you will know if you might have a child with sickle cell disease. Your doctor might want you to get genetic testing. If you are already pregnant, you might get testing for your fetus.

Most states test newborn babies for sickle cell disease. If your state does not test for it, your doctor can order a special blood test for your baby. This test will show if your baby has sickle cell disease.


How is sickle cell disease treated?
Treatment aims to prevent crises and relieve symptoms. If your child has sickle cell disease, he or she is at risk for some infections, lung problems and pain. Your child may need to take an antibiotic (usually penicillin) to prevent bad infections. Also, certain vitamins, like folic acid, can help your child's body replace damaged blood cells. Your child needs to have all of the recommended shots for children and a few special shots.

Your child will need to see your family doctor often for blood tests and to be checked for damage to internal organs. If your child has pain, fever, weakness or trouble breathing, he or she may need IV (intravenous) fluids (liquids given through a needle placed in your child's vein) and antibiotics. Your child may also need oxygen, blood transfusions and strong pain medicines. Special treatments will be needed if your child has organ damage.


When should I call my child's doctor?
You should call your doctor right away if your child has any of these signs:
Swollen hands or feet
Sudden paleness of the skin or nail beds
Yellow color of the skin or eyes
Fever or signs of infection
Swelling in the abdomen (tummy)
Sudden tiredness with no interest in what is going on
Erection of the penis that won't go away
Trouble hearing or seeing
Weakness on one side of the body or a sudden change in speech
Headache
Trouble breathing
Joint, stomach, chest or muscle pain, or limping


Can sickle cell disease be cured?
Generally, no. But with good care, people with sickle cell disease can live a mostly normal life. Bone marrow transplants can cure the disease in a small number of people.


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More Information
Special Conditions in Children

Preventing a Sickle Cell Crisis For Kids: Do You Know About Sickle Cell Anemia? For Teens: Sickle Cell Anemia
Return to top

Other Organizations
Sickle Cell Disease Association of America
231 E. Baltimore Street, Suite 800
Baltimore, MD 21202
410-528-1555
Written by familydoctor.org editorial staff.

Opportunities to Improve Outcomes in Sickle Cell Disease by SR Mehta, M.D., A Afenyi-Annan, M.D., M.P.H., PJ Byrns, M.D. and R Lottenberg, M.D. (American Family Physician July 15, 2006, http://www.aafp.org/afp/20060715/303.html)
Sara/Peace4 Co-Founder Comment by Sara/Peace4 Co-Founder on June 6, 2009 at 3:15am
Lourdes, bless you for mentioning! I too am a registered bone marrow donor...honestly, there is no reason that, if we are able, every single one of us shouldn't be... I think that is a great start towards these efforts as well! Thanks so much again, Lourdes!

And, Gwennie...your favorite picture..honestly...I look at it and think...surely this must be the strongest "argument" towards proving that, yes, there is a God...what a miracle...
Cyndi Comment by Cyndi on June 6, 2009 at 7:05am
She is absolutely beautiful!!! This has such useful information. Is there any possible way to make the font larger? I can barely read it :( I would love to post this on twitter too. Hugs n Prayers for that beautiful angel T'Niece
Maureen Comment by Maureen on June 6, 2009 at 10:51am
Gwennie,

What is it we can do for T'Niece and her parents? What are their daily needs that maybe we could help with? I know they are military so I'm assuming that T'Niece is being treated by the military medical community, correct? Are the parents confident in T'Niece's doctors and whatever course they have mapped out for her treatment?

Do you need us to spread the word on being a bone marrow donor? I was denied years ago becoming a donor because I was on an inhaler (occassionally) for asthma. Something about inhalers can interfere with the anesthesia. I don't take any meds now thanks to a very gifted former military allergist I was able to pin point all the triggers and manage my asthma just fine. I may try again and see whether or not they deny me this time.

I also have a cousin who is an extremely gifted neuro surgeon, I don't know how much he has ever been involved with sickle cell but if T'Niece's parents need referrals I can see who he suggests.

Let us know what we can do to help.

Maureen
GWENNIE J Comment by GWENNIE J on June 6, 2009 at 11:07am
I am not quite sure. My main goal was just to get all the prayers they need to help them through all the trips to the hospital, am a bit overwhelmed with sara's love and thoughtfulness and everyone elses as well. I think I would ask them, I should speak with them this weekend my son should be getting close to coming in to port this next week so, maybe if I have them together. I think it will help me to know more. I love everyone and thank you so much for caring.
Sara/Peace4 Co-Founder Comment by Sara/Peace4 Co-Founder on June 6, 2009 at 11:40am
Thanks MissTwitterWorld! ;)

Some of the font won't change size, it's being stubborn, lol...but changed most of it, I think...
Angelbound Comment by Angelbound on June 6, 2009 at 1:22pm
Umbilical Cord Blood a Valuable Source of Treatments
Umbilical cord blood is a rich source of stem cells that does not require the destruction of life. Collected at birth, cord blood can be designated for public banks or stored for private use.

Personal Storage

Families can choose to store their baby's cord blood as a precaution for future illness.

Personal storage is especially recommended when a family member has a disease known to be treatable through bone-marrow transplantation -- such as leukemia.

Public Banks

According to the National Marrow Donor Program, cord-blood banks collect, process, test and store donated umbilical cord blood -- frozen as a unit available to transplant. When a donor match is found, the cord-blood stem cells can be used to treat the existing condition.

"Stem cells from umbilical cord blood have proven to be a source of healing for many Americans,"
It's a win-win for everyone involved."
Georgia recently passed a law establishing a statewide donation system," "Under the new law, pregnant women will be asked if they want to donate to the cord-blood bank when they give birth."
The federal government should watch and learn

http://www.citizenlink.org/content/A000004778.cfm

In 1999, Joseph Davis was born with sickle-cell anemia, a life-threatening blood disease that deprives the body of oxygen. At 8 months old, he had his first of many sickle-cell crises — his hands and feet swelled, and he had numerous fevers. He was in and out of the hospital 20 times and had three blood transfusions before he reached his second birthday.

When Joseph’s parents, Joseph Sr. and Darlene, got pregnant with Isaac, they learned about treatments available through umbilical cord-blood technology. When Isaac was born in 2002, his cord blood was a perfect match and saved his big brother’s life. The Texas family was thrilled by the unexpected blessing.

On May 10, 2002, Joseph had the cord-blood transplant from his brother, and by the end of June he was out of the hospital — healed.

http://www.citizenlink.org/content/A000007550.cfm

There are many many links on both these articles, easy reading.

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Cyndi added a discussion
1 hour ago
that is so true carole, the best way to cope is in giving, gave a smile a hi how are you.
1 hour ago
This is a great article, with an emphasis on: gratitude, realism, and service. - Bob
3 hours ago
John Quinn added a discussion
The Pixel Project: Taking on the challenge of raising US$1 million (or more) for Malaysia's Women's Aid Organisation (http://www.wao.org.my) and the U.S.A.'s National Coalition Against Domestic Violence (http://www.ncadv.org) during the biggest gl...
3 hours ago
4 hours ago
Sara..I know exactly how you feel.When I first became disabled I went from $450 a week to $000 !! I didn't get SSD untill 2 yrs later ! But it did pass..a VERY rough "dessert "period of my life...love always...john
4 hours ago
Angel..I'M FINE HONEY !!!!!!!! LOL..LOL..I just started reading these again cause I was a little depressed.It did the trick..I'M FINE ANGEL !! love always...johnny
4 hours ago
SARA....xxxxxxxxoooooooxxxxxxxoooooo...love always...johnny
4 hours ago
She told HIS SORRY ASS !!!...john
4 hours ago
Angel...Sounds like something YOU would do :) ROFLMAO !!!...love always...johnny
4 hours ago
Sara..YOU'RE SO FUNNY !!! ROFLMAO !!!!!!!!!!!...love always...johnny
4 hours ago
awww Maureen..ROFLMAO...You read me like a book my bonnie lass !! LOVE ALWAYS...johnny
4 hours ago
Sara..YES..I did enjoy it VERY MUCH !! ROFLMAO !!!!!!!!!!!!!!//johnny
4 hours ago
My oldest son Mike saw Ronald after waiting 1/2 hr in line.After getting close(2 more ahead of us) he burst out crying and started running away !He was 4 yrs old !!...john
4 hours ago
SARA..Shame on you ! You're still the one I love though..lol..lol...always..johnny
4 hours ago
Well one thing you're wrong on hon..It was done by a WOman !!! I know cause I've seen it.Just LAZEY !! love you anyway...LOL..LOL...johnny
4 hours ago
Kurt..What a beautiful shot of your family !!..john
4 hours ago
I must get that book. I'm having a tough time getting thru 'The Shack'. Thank you so much for sharing that with me. Today, I was just thinking..another Christmas without Heather and no job...again..except for taking care of my mom. I know life and...
4 hours ago
I can take a good guess why !! LOL..LOL..ROFLMAO !..john
5 hours ago
Bobby..What ever your situation is,you'll come out of it ok !Sometimes we need to get rid of "excess baggage" and move on with our lives.It is just part of our souls "growing experience".Don't worry if you're in a dessert part of your life as ther...
5 hours ago

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