tag:blogger.com,1999:blog-14466372188302579362012-01-27T16:25:31.351-08:00The voice of people living with Sickle Cell Disease. Information, education and communication, finally, with our voice.Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.comBlogger851100tag:blogger.com,1999:blog-1446637218830257936.post-41777809771641356842012-01-18T18:44:00.000-08:002012-01-18T22:27:20.325-08:00

(photos by Denise Truscello/ WireImage) On January 15, 2012 Play Without Pain: Children’s Hospital Sickle Cell Benefit at The Colosseum in Caesars Palace began with Gary W. Loveman, Chairman, Chief Executive Officer and President of Caesars Entertainment Corporation thanking everyone for supporting this life-changing event. He explained the alarming statistics of children suffering and dying from

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com2tag:blogger.com,1999:blog-1446637218830257936.post-72329310770049953692012-01-08T15:08:00.000-08:002012-01-08T20:36:46.292-08:00

All I can say about the coming year of 2012 is WOW!!!!!. I have heard more about Sickle Cell Disease in the last six months than I have in the past five years. That is partly due to the tireless voices of SCD patients speaking out, SCD Associations not giving up the fight, and a renewed national commitment from American government agencies like National Institute of Health (NIH/NHLBI)) and Center

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-23305747262398953042011-12-15T19:30:00.000-08:002012-01-08T15:02:51.813-08:00

(blood donor at Boston University)On September 1st, 2011, Charon Simmons 22, went into cardiac arrest not once but twice and had multiple organ failure.Due to multiple organ failure, Charon needed over 75% of his blood replaced for a survival chance of living. He received multiple transfusions of red blood cells and platelets as a very important part of his treatment.Charon has Sickle Cell

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-69698752461062570192011-11-29T11:38:00.000-08:002011-11-29T12:22:35.605-08:00

Did you know if you get 10 blood transfusions (in your lifetime) that you are at risk for iron overload?No? I didn't either. What is iron overload? Healthy red blood cells usually live 120 days, damaged (sickled) cells live less. People with sickle cell or Thalassemia sometimes need to get a blood transfussion. When we receive a blood transfusion we get more "hemoglobin", which helps our blood

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-65540936281970477572011-11-09T09:28:00.000-08:002011-11-09T17:57:21.344-08:00

Young people with Sickle Cell Disease often wonder, "Why me? Why do I have to have this disease?" These questions often lead to anger, despair and resentment. This resentment often leads to non-acceptance of their illness and to ignoring the need to take care of themselves. Death amoung young people who are in transition from childhood care to adult (self-managed) care is entirely too

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-65853885134283956832011-10-31T19:36:00.000-07:002011-11-04T18:24:25.901-07:00

My personal crusade is to have Sickle Cell Disease recognized as a “blood disorder” and not a “black disorder.” This is not to ignore the truth about its origin. In regions of the world where malaria is found, nature allowed a mutated red blood cell to exist which had a benefit of preventing malaria. While preventing malaria, the mutated blood cell was inherited and thus, Sickle Cell Disease

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-115154117603549682011-10-22T14:19:00.000-07:002011-10-24T13:13:16.453-07:00

I wrote a blog post “The Best Therapy,” about my love of travel. I received many favorable responses. I was excited about hearing from other people who love to travel, like me, despite dealing with a disability. I was excited until I received a letter written by Dr. Sota Omoigui, from the L.A. Pain Clinic in Hawthorne, CA.Dr. Omoigui wrote a letter to The Open Hematology Journal, 2010, entitled,

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-35326729770476392562011-10-17T23:59:00.000-07:002011-10-18T00:11:56.373-07:00

Let's not forget Nazaire, an original voice for the awareness of sickle cell disease. Through his art,featured here, he brought a stark reality to the suffering we all know too well.Check out his website Sickle Cell Art, and let's continue to support his efforts to make the world more beautiful through his art.

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-22136029507241976742011-10-07T10:40:00.000-07:002011-10-07T11:41:49.393-07:00

Dr. Carolyn Rowley P.H.D and The Cayenne Wellness Center is creating"FACES of Sickle Cell Photo Project".They hope to compile photos of people with sickle cell disease into a book or museum exhibit in order to exhibit the faces (& lives) of people affected by the disease.***How it works is Dr. Rowley makes an appointment to come to someone's home, office, or wherever they feel comfortable meeting

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-6708299993258460012011-09-30T17:04:00.000-07:002011-09-30T18:00:48.159-07:00

Per American Pain Foundation September 29, 2011 article: The Dr. Oz Show interviewed top doctors this week about a familiar subject— pain. Dr. Oz was shocked to learn what so many of us live with every day. Pain is prevalent, finding good pain care is hard, and women face discrimination when it comes to pain assessment and treatment. Please take a moment to send a note to Dr. Oz, thanking him and

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-29688651946547297192011-09-22T19:22:00.000-07:002011-10-04T10:33:53.024-07:00

Check out this link to the NHLBI new information center: Sickle Cell Information CenterAlso, See National Institute of Health (NHLBI) Guidelines for Health Professionals on the Management of Sickle Cell Disease, (dated 2004) Planned for update in January 2012.reference: Information for Health Professionals

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-10071808902692331552011-09-10T14:26:00.000-07:002011-10-17T09:38:44.618-07:00

In tribute to Adeja Johnson during Sickle Cell Awareness Month 2011.A warrior is a person engaged or experienced in warfare or figuratively a person who shows or has shown great vigor, courage, or aggressiveness.Adeja Johnson is one such person. She was a true sickle cell warrior. Adeja fought sickle cell disease with the newly discovered procedure, Stem Cell Transplant. There are many

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com4tag:blogger.com,1999:blog-1446637218830257936.post-45327351198518222812011-09-03T13:00:00.000-07:002011-09-03T14:53:03.415-07:00

In the United States when President Nixon signed the “Sickle Cell Control Act “ (1972) the life expectancy for people living with sickle-cell disease was 14 years old. In the rest of the world it was 5 years old (per World Health Organization). Since that time, in America, treatment and care for pediatric patients was greatly improved. I remember going to a sickle-cell disease clinic in 1972

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-31451136075565136192011-09-01T15:36:00.000-07:002011-09-01T16:00:31.842-07:00

Get smart about Sickle Cell Disease and Thalassaeemia around the world. World Health Organization (WHO) Sickle Cell Information Center Sickle Cell Disease Foundation California American Sickle Cell Anemia Association Sickle Cell Disease Association of America National Heart, Lung, Blood Institute Is Sickle Cell Disease an epidemic worldwide? Check out the World Health Organization (WHO)

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-36677725031521389572011-08-27T18:02:00.000-07:002011-08-29T14:00:22.259-07:00

I love to travel, but sometimes it is difficult when I’m not feeling well. What most people take for granted, we who suffer from chronic illness must consider when doing the simplest things. Even a road-trip is a big deal for us. The September issue of Westways Magazine, the Automobile Club of Southern California’s travel magazine, contained an article by Heidi Nye, “The Best Therapy, the

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com3tag:blogger.com,1999:blog-1446637218830257936.post-10934017379169985482011-07-13T22:53:00.000-07:002011-07-13T23:06:43.477-07:00

According to American Pain Foundation there has been a "voluntary pain medication recall" for mis-labeling.They say: "Endo Pharmaceuticals, Inc., and Qualitest, a generic drug manufacturing subsidiary, issued voluntary recalls on June 27, 2011 for certain lots of oxycodone with acetaminophen (Endocet), hydrocodone with acetaminophen (generic Vicodin) and butalbital, acetaminophen

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com2tag:blogger.com,1999:blog-1446637218830257936.post-76393988487186188442011-06-14T13:06:00.001-07:002011-06-14T19:39:36.760-07:00

As reported in an article in the the June 2011 Pain Monitor "Researchers from departments of pediatrics at five U.S. medical centers collaborated on a study of 21 SCD patients to determine the impact of the disease on the rate at which morphine begins to effect relief and the duration of relief."As we already know these researchers found, "Results showed that the half-life of morphine in the SCD

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-84514243456633155352011-05-19T14:24:00.000-07:002011-05-19T14:32:05.414-07:00

The Sickle Cell Disease Association of America (SCDAA) and the Centers for Disease Control and Prevention (CDC) cordially invite you to join us in the celebration of World Sickle Cell Awareness Day to be held June 23 - 24, 2011 at the World Congress Center in Atlanta, GA. The theme of World Sickle Cell Awareness Day: Educate and Unite highlights the need to increase awareness of the global

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com4tag:blogger.com,1999:blog-1446637218830257936.post-57756365516564365122011-05-05T08:39:00.000-07:002011-05-05T08:55:25.270-07:00

In a recent article by Salynn Boyles for WebMD Health News it was discovered that “after just four, 20-minute instructional sessions in mindfulness meditation, most participants in the small study experienced big reductions in pain intensity and unpleasantness of pain.”In this study researchers recruited 18 healthy young adults who had never meditated prior to joining the study.Over four, 20-

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-33288882589031412002011-04-18T10:28:00.000-07:002011-09-29T09:41:00.447-07:00

Complications of Sickle-cell disease related to the kidney are Sickle-cell nephropathy and chronic renal failure.1. Nephropathy is caused by the long term usage of analgesics (pain medicines). These pain medicines include aspirin, acetaminophen, and nonsteroidal anti-inflammatory drugs, or NSAIDs. Over use of pain medicines can cause a form of nephropathy called "chronic analgesic nephritis,"

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-86793838370007222282011-04-08T22:51:00.000-07:002011-04-21T13:26:10.597-07:00

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-49748102360361051182011-03-01T14:28:00.000-08:002011-03-01T14:42:34.018-08:00

This month Time Magazine is discussing pain in their article Understanding Pain. "Pain is the human bodyguard, the cop on the beat racing to the scene, sirens wailing, shutting down traffic."People who suffer with cronic disease know this all too well. Our sirens are always wailing, even if we block out the noise. Finally, the world is looking deeper into what we already know.Read more: Time

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com2tag:blogger.com,1999:blog-1446637218830257936.post-82925959671181679052011-02-10T21:01:00.000-08:002011-02-12T19:07:35.043-08:00

Many of us hide our health issues from family and friends. I didn't tell anyone I worked with until I called my boss from the hospital (with a horrible raspy voice) telling him, "I have sickle cell and I need a blood transfusion."I was tired of hiding and sick as a dog.The response of my boss and co-workers was surprising. Their compassion poured over me and I was so relieved. I could finally

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-19965608974336970602011-02-04T21:31:00.000-08:002011-02-04T21:41:44.187-08:00

Information From: The American Pain FoundationThe Committee on Advancing Pain Research, Care, and Education is calling on the pain community to help committee members better understand what it is like to live with pain. This is a critical time to share your story, whether you are an individual with pain, family member, caregiver or health care provider. With the passage of the Pain Care Policy

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-5848580138439990922011-01-20T10:32:00.000-08:002011-01-20T11:21:59.244-08:00

I was thinking about the new year and all the possibilities of opportunity. I reflected on my hopes for publishing my book (this year), and my desire to maintain good health and strength in order to fulfill new dreams. All this reflecting left me with a sense of gratitude to just be alive to see this day. To live with sickle cell disease is no easy task. Despite pain (daily), mood swings, and

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-70095383572988844982010-12-31T16:38:00.000-08:002010-12-31T16:40:02.664-08:00

Have a blessed and healthy new year!!!!!

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-78551861863051307812010-11-18T01:15:00.000-08:002010-11-18T01:46:56.745-08:00

After the toughest year of my life, I’m thankful.I could list the events for all to see, only to reveal the true depth of my loss and pain.I could relive them; just to remind myself how far I’ve come.But what I am is just thankful.For loved ones young and old, wise and foolish, all enriching my life.For that special one, deep inside my inner circle warming my soul.For the knowledge that I exist,

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-44920659301434517182010-10-25T21:38:00.000-07:002010-10-25T21:51:11.496-07:00

I love this video...we're fighting this sickle cell battle together!!!!!!!!Check it out. http://scdsoldiernetwork.com/home*

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-84139589174782121522010-10-19T16:43:00.000-07:002010-10-19T16:56:50.157-07:00

Affordable Care Act (U.S. health reform)Historically, people with disabilities have been severely disadvantaged in accessing private health insurance, discriminated based on pre-existing conditions, with limits and exclusions of benefits, and at risk of losing coverage on short notice.In 2014, according to the Affordable Care Act (Obama’s health care reform) if you have a pre-existing condition

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-17968787967590440942010-10-04T18:28:00.000-07:002010-10-04T18:40:23.311-07:00

A study conducted by Kenneth R. Bridges, M.D. of the Joint Center for Sickle Cell and Thalassemic Disorders identified issues that affect people with SCD as:Under-education - Under-employment - Medical bureaucracy - Basics of Living - Depression - Antisocial - self-destructive behavior.I agree with all of these findings. What I want to know is anyone really helping people with sickle cell?I’ve

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-59028897179950597782010-09-03T11:11:00.000-07:002010-09-15T19:14:22.689-07:00

SCDAA 38th Annual ConventionWashington, D.C.September 22-25, 2010 Giving New Voice to Sickle Cell Disease ~100 Years of RecognitionGaylord National Hotel and Conference Center, Washington D.C.For more information go to Sickle Cell Disease Association of America: http://www.scdaaconvention.com/orhttp://www.sicklecelldisease.org/

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-22272096098415687622010-08-26T14:49:00.000-07:002010-08-26T14:58:35.125-07:00

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-13931062595721842492010-08-26T14:27:00.000-07:002010-08-26T14:40:37.444-07:00

Everytime I'd call my mother and ask how she was doing she'd say, "I'm not dead yet!" Her response used to hurt my feelings because I was really concerned about her wellbeing.Well, I have been out of touch for a while. My personal life was on a one-way ticket to no where. But after the dust has settled, I must say as mama did, I'm not dead yet!I say this with a smile, a wink and hope that my path

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-86018549919283842482010-03-29T23:14:00.000-07:002010-03-29T23:42:59.126-07:00

The University of Illinois Medical Center at Chicago has housed a sickle cell center for adults for the past 25 years. Recently, in efforts to support patients throughout life and debunk myths about the condition, it has opened a new acute care treatment center to manage uncomplicated pain crisis.In the past, chronic pain treatment associated with sickle cell disease was coupled with the lack of

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-64302638765083785092010-02-25T18:57:00.000-08:002010-02-25T19:06:07.490-08:00

We’ve heard the stories about football players being tested for sickle cell disease after players died in Florida and Ohio. These players never knew they had sickle cell disease because they never showed any outward signs.After strenuous exertion, extremes temperatures and dehydration, these players died. Some of their families were blamed for not telling coaches that they had this disease. The

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-35759067306525487652010-01-07T17:42:00.000-08:002010-01-09T18:13:44.550-08:00

A recent article in the American Pain Foundation’s newsletter was entitled “Avoiding Caregiver Burnout”. This title reminded me of my caregivers. They were first my mother, now my husband and soon to be my children. I thought about these people, who did not ask for the job, and what they must be feeling while I’m in the hospital getting blood and morphine pumped into my veins. They sit in

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com5tag:blogger.com,1999:blog-1446637218830257936.post-50578128514600428762009-12-22T07:43:00.000-08:002009-12-22T12:46:27.222-08:00

Part 2 - Anyone Want a Bone Marrow Transplant ormaybe a Stem Cell Transplant?I couldn’t sleep thinking about this “cure”. I was wondering is there is a rush to yell cure?Researchers gave 10 patients ages 16 to 45 bone marrow Stem Cells. They gave them low levels of radiation, chemotherapy and high levels of immune suppressant drugs.People with SCD normally have spleen problems; this makes them

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-38407164490844234292009-12-15T23:46:00.000-08:002009-12-16T00:03:55.233-08:00

Anyone Want a Bone Marrow Transplant ormaybe a Stem Cell Transplant?The airways are popping. The media blitz is in full affect. Massive editorial posts have been sent all over the internet. The word is out. There MAY be a cure for Sickle Cell Disease.According to a New England Journal of Medicine report dated December 10, 2009, researchers at the U.S. National Institutes of Health say that a new

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com3tag:blogger.com,1999:blog-1446637218830257936.post-26426758939119619212009-12-13T08:47:00.000-08:002009-12-13T09:03:05.335-08:00

I've been screaming from rooftops that SCD affects all people, not just those of African ancestry. Thank God the Sickle Cell Disease Association of America finally heard.The SCDAA 2009 poster childhttp://www.sicklecelldisease.org/*

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-39352978777453495182009-11-30T10:33:00.000-08:002009-11-30T10:39:36.692-08:00

I'm baaaaack.Not 100%, using one good eye, but living my motto "Live On". No pity party here, just information, education and support.Now on to business.Get Educated: The Department of Education is accepting applications for new SSS Program awards for FY 2010. The purpose of this program is to increase the number of disadvantaged low-income college students, first generation college students,

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-23259668124468020132009-10-20T12:59:00.000-07:002009-10-20T13:03:48.022-07:00

I wrote this in response to losing my eyesight for two weeks.When your body fails you fear will steps in. During this time you may ask yourself, “How will I make it?”, or “Who will help me?” and “Why do I have to suffer?” After this, pity comes, and then depression. You might then ask yourself, “Is life only about suffering?” To all of these questions there is no correct answer. Suffering is a

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-68748644033726307732009-09-15T18:16:00.000-07:002009-09-15T18:18:53.382-07:00

There are things in the lives of people with sickle cell disease that trigger a sickle cell “crisis”. Some things like simply living, working and surviving can causes triggers to push us over the edge into the pit of pain. Other things, in some cases, are preventable like lifestyle choices. Either way, once the trigger is set, a sickle cell crisis begins with full fury. Some of the triggers

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com4tag:blogger.com,1999:blog-1446637218830257936.post-75453415761940755432009-09-08T11:19:00.000-07:002009-09-15T18:16:27.801-07:00

As a child I wondered why minor cuts to my legs and arms took a long time to heal. Everyone thought I picked or bothered my injuries but I hadn’t. They just wouldn’t heal. Sometimes, they would get infected and spread. As a child, I didn’t know what was wrong with me. Now I do. People with Sickle Cell Disease sometimes get leg ulcers that don’t heal. The reasons why are listed below. Live and

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com3tag:blogger.com,1999:blog-1446637218830257936.post-62537236029783830582009-08-31T09:51:00.000-07:002009-08-31T11:41:37.175-07:00

I surveyed a group of people who suffer with Sickle Cell Disease. The list of major issues they face with management of their disease AND with their interactions with healthcare providers are listed below:1. Don’t like the side effects of medications (i.e. MS Contin, Vicodin).2. Lack of compassion from healthcare providers.3. Doctor’s who reduce pain medication prescriptions, not believing their

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-59071598448288316102009-08-24T19:55:00.000-07:002009-08-24T20:00:21.793-07:00

People Living With Sickle CellAre you living with Sickle Cell Disease? Go to the on-line community to meet other people with this disease. We support each other and share information.http://sikcell.ning.com/

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-29558618225691530782009-08-18T23:23:00.000-07:002009-08-24T19:55:33.854-07:00

Blood is the life force within our bodies. Like oil in an engine, we can’t run without it. We can live with a transplanted heart and we can live without a kidney. If we lose a limb, we can order up a prostatic part and keep going.Blood, however, cannot be replaced entirely. Sure, we can get transfusions, which will supplement what we already have, but we need a full supply to live.People with

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-70343454600556561572009-07-20T14:23:00.000-07:002009-07-20T19:41:27.073-07:00

My son plays football so this story is close to my heart.The first time I heard about football players (with sickle cell) dying on the field was a story about a young player from Florida. I read, after he died from heat and over exertion, his family was blamed for "not telling anyone" that he had sickle cell trait. The problem was, he nor his family knew that he had sickle cell.This terrible

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com2tag:blogger.com,1999:blog-1446637218830257936.post-76676703060995330262009-07-08T16:53:00.001-07:002009-07-08T17:11:17.005-07:00

When you are in pain the last thing you want to do is move your body. When a person with sickle cell disease has a episode of pain or “crisis, ” the pain is beyond understanding. What I have discovered is if I strengthen my body through exercise I am better able to manage pain. This is not to say exercise prevents a crisis or helps during a crisis. It is to say, a strong body is a healthy body.

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-77697774894831142302009-06-21T11:43:00.000-07:002009-06-23T17:26:10.266-07:00

Ability Magazine April/May 2009 issue features my article, "Dancing with Sickle Cell Anemia." Order a copy of the magazine at http://www.abilitymagazine.com/. You can order a PDF (electronic) copy of the issue for $2.95 or you can have it mailed to you for $6.95. Kristi Yamaguchi is on the cover of the April/May 2009 issue. This article confirms my mission. I have determined to cry out to the

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-54313122230019799992009-06-18T21:05:00.000-07:002009-06-19T11:56:54.870-07:00

I’ll start by saying I’ve had two non-serious strokes and many silent ones. It seemed odd to me that while I was having those strokes, doctors who treated me never wanted to say the word “stroke.” I had all the symptoms: blurred vision, slurred speech, intense headache, and numbness on face and hands. Doctor’s seeing these symptoms treated me for pain, worked to bring my blood pressure down, and

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-20045891511054470872009-06-02T13:00:00.000-07:002009-07-02T03:37:33.670-07:00

The United Nations (UN) celebrates the first annual Sickle Cell Disease World Day at the UN in New York.I can't help being happy, excited and overjoyed. The United Nations General Assembly approved a Resolution proposed by the delegation from the Republic of Congo Brazzaville and co-sponsored by 24 Member States.June 19th of each year was established as Sickle Cell World Day at the UN.This years

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com5tag:blogger.com,1999:blog-1446637218830257936.post-65875156822066739402009-05-26T10:40:00.000-07:002009-05-26T10:59:03.348-07:00

Picture this, you have Sickle Cell Disease (a disease of the red blood cell) and you marry a man who is diagnosed (at age 44) with Beta Thalassemia (also a disease of the red blood cell). Now you think to yourself; why didn’t this man know he had a blood disease?Often people who have Thalassemia don’t know they have it. Sometimes they’re told, “You’re anemic,” and that’s all they’re

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-68964131237516366252009-05-12T16:15:00.001-07:002009-05-12T16:33:30.748-07:00

I was recently sent an email where I was asked my opinion regarding sickle cell management in the US and abroad, as it relates to improving care for sickle cell disease. The question was posed by suggesting more of a cultural/social model of care rather than a medical one.I am just a patient with Sickle Cell Disease, and an advocate for people living with the disease. I am not a medical

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com2tag:blogger.com,1999:blog-1446637218830257936.post-32775465293700125762009-04-22T14:58:00.000-07:002009-04-29T10:28:01.399-07:00

When you go to the ocean the altitude level is equal to zero (0). When you travel up a mountain the altitude level increases and the air pressure decreases. At places like the Grand Canyon the altitude goes up to over 6,000 feet elevation, and in the Rocky Mountains of Colorado it can peak to over 14,000 feet elevation. As the elevation increases, the altitude is higher and the air pressure is

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com2tag:blogger.com,1999:blog-1446637218830257936.post-37283059260591740282009-04-05T13:22:00.000-07:002011-10-31T19:31:42.819-07:00

Some people have asked why I posted two previous blogs from a health-care worker in India? Well, in my opinion, Sickle Cell Disease and Thalassaemia are global problems that are growing. Ignorance and avoidance have limited the recognition that these disorders have a true impact on society. With global immigration increasing, we have to look at the global impact these diseases have on children,

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-91343009985816268672009-03-23T13:39:00.000-07:002009-05-08T11:22:39.663-07:00

There is a lot of money to be made by non-profit organizations that support specific “diseases.” Patients, with those diseases, may or may not benefit from those organizations unless they seek them out. One thing that every patient with Sickle Cell disease can benefit from is the donation of blood.I recently read an article about a young girl with Sickle Cell disease who has received over 400

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-71077344375216823092009-03-10T11:55:00.000-07:002011-10-31T19:35:36.343-07:00

This post is part 2 of a contribution from Hari Prabhakar, from the Sickle Cell Disease Center at Gudalur Adivasi Hospital in India.The recent 2007 World Health Organization (WHO) and Thalassemia International Federation (TiF) report (see link below) speaks on the need for comprehensive sickle cell centers in developing countries to manage the burden of SCD, and also notes that in the USA,

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com2tag:blogger.com,1999:blog-1446637218830257936.post-36009259837005693102009-03-06T09:42:00.000-08:002009-03-24T12:48:16.608-07:00

I’ve heard too many stories about young people (ages 13-30) with Sickle Cell Disease who just give up on life. They believe they've gotten a bad deal from God, that life is unfair, and it's not worth living if it includes suffering.In result, these young people drink alcohol, smoke cigarettes (and whatever else); and push their bodies beyond its limits. Trying to keep up with their friends,

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com2tag:blogger.com,1999:blog-1446637218830257936.post-86980272291485757732009-02-23T16:06:00.000-08:002011-10-31T19:33:23.370-07:00

This post is a contribution from Hari Prabhakar of the Sickle Cell Disease Center, at Gudalur Adivasi Hospital, India. Sickle Cell Disease (SCD) is truly a global genetic disease, and there has often been a misconception that SCD is found only among those of African/African-American descent. In order to successfully manage the disease internationally and formulate global strategies, it is

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-89073705473023396352009-02-11T15:52:00.000-08:002009-02-20T12:35:26.100-08:00

Calling all people with Sickle Cell Disease to participate in a research study.The study is sponsored by Ms. Phyllis Bazen, MSN, FNP-C, a Doctoral Candidate at the University of Rochester School of Nursing. Ms Bazen is the Study Coordinator.The purpose of the study is to explore the most common stressors that adults with SCD cope with and to explore the effects that these stressors have on mood

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-12417491350995601512009-01-24T17:31:00.000-08:002009-02-11T16:27:10.409-08:00

I was researching Sickle Cell Disease around the world…I’m just a curious soul…. and what I kept finding (in different reports) was the same quote: “The origin of Sickle Cell Disease is Africa and primarily affects people of African decent.” I even read one (racist) report that said: “The African footprint in the world is Sickle Cell Disease.” I was baffled. I’ve heard of cases of Sickle Cell

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-56627351226776322012009-01-15T10:29:00.000-08:002009-01-29T09:56:52.210-08:00

In people with Sickle Cell Disease their red blood cells are dehydrated (they are thirsty for water). These cells are thirsty each and every day. Just imagine living in the Sahara desert and there is nothing but sand. Eventually, you will die of thirst, and you will die quickly. Well, that’s what happens to our red blood cells. They need water….everyday.Dehydration in red blood cells, (according

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-32367551671155618352009-01-10T21:14:00.000-08:002009-01-10T21:32:30.208-08:00

A complication of Sickle Cell Disease is a condition of the eye called Retinopathy. This condition occurs when the blood vessels in the retina become blocked, grow haphazardly or become leaky, and extra blood is trapped within the space between the eye lens and the internal membrane of the retina. This can damage the retina and cause retinal detachment. Retinal detachment is a medical

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-13086494992282377782009-01-02T21:01:00.000-08:002012-01-08T15:07:25.606-08:00

When I was 10 years old a well meaning doctor bent down to my 3 foot height and told me very gently, “You know, you’re only going to live to be 30 years old.” I blinked and thought, “That’s a long time from now.”Fast forward thirty-eight years and I’m 48 years old and still alive.That doctor didn’t realize that he had given a 10 year-old child a death sentence. He could not have imagined that his

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com2tag:blogger.com,1999:blog-1446637218830257936.post-9232653929096374632008-12-20T13:52:00.000-08:002008-12-20T14:05:34.027-08:00

Researchers have finally identified the genetic address of Sickle Cell Disease. It’s BCL11A, that wonderful alphanumeric. In a report from the National Institute of Health on Friday, December 19, 2008, they report, “Researchers have identified a gene that directly affects the production of a form of hemoglobin that is instrumental in modifying the severity of the inherited blood disorders

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-85552477172494232432008-12-12T12:45:00.000-08:002008-12-20T14:03:17.306-08:00

I was reviewing my blog and I kinda felt the “woe is me” vibe coming from my words. That is the farthest from what I feel, think or believe. I have Sickle Cell Disease, like millions of others. We all suffer in silence because no one can feel our pain for us. We all live past this pain. We all work, play, sing, and dance despite our condition. Heck, a few of us even do great things with our

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com2tag:blogger.com,1999:blog-1446637218830257936.post-30315000614270550012008-12-05T10:19:00.000-08:002008-12-11T13:09:12.433-08:00

Most people are defined by the work they do. A fireman will boast about how many fires he puts out, a doctor will describe a perfect surgical procedure she has performed, or a singer will sing songs that people love to hear. Work is good, and a job well done always feels good too. People living with Sickle Cell Disease, if they can work, press past the pain and limitation of their bodies and

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-48951945325903882972008-11-08T10:47:00.000-08:002008-11-11T03:30:11.417-08:00

I was going to write a separate blog for each wonderful Sickle Cell Center, Hospital, or Clinic that stood out as a beacon of hope for patients with Sickle Cell Disease. What I found was way too many of them to mention separately. There are so many doctors, advocates, universities, clinics and organizations who are fighting in-behalf of patients with Sickle Cell Disease. They are working to

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com2tag:blogger.com,1999:blog-1446637218830257936.post-9390326913634672092008-10-27T03:28:00.000-07:002008-10-27T03:40:52.354-07:00

There has been a lot of talk about drugs that treat Sickle Cell Disease. (Not to mention cures that work for a few people but not all????) Currently, I’m not taking any drugs but I really wanted more information about the two drugs available, Nicosan and Hydroxyurea. Here’s what I found: The first drug I’ll discuss is the only US Food and Drug Administration (FDA) approved drug for the

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com8tag:blogger.com,1999:blog-1446637218830257936.post-56642821534017807212008-10-21T09:37:00.000-07:002008-10-21T09:42:36.992-07:00

####################Let’s finally talk about pain. I’ve avoided the subject because I wanted to stay upbeat and positive. But, the more I write and talk about Sickle Cell Disease, the more I see the need to discuss pain.How does Sickle Cell pain feel you ask yourself? Well, I’ll tell you a few examples of the types of pain that I have personally felt during my life’s journey with Sickle Cell

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-37023772296407406472008-10-19T11:41:00.000-07:002011-08-30T13:30:56.394-07:00

I always wondered why people who suffered with Sickle Cell Disease had yellow eyes. Not yellow contact lenses, but the white part of their eyes were yellow instead of white. I found the whites of my eyes would turn yellow periodically, and the only time they truly became white was when I was hooked up to an IV of glucose (sugar & water) in the hospital after a Sickle Cell crisis. (picture is

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-22312751334318905032008-10-16T12:38:00.000-07:002008-10-17T11:33:52.226-07:00

This is the first shout out (say hello) to all those people/clinics who provide comprehensive services for both adults and children and the families of those with Sickle Cell Disease.The University of Illinois Medical Center has a mission to "improve the quality of life for individuals with sickle cell disease and to reduce the morbidity and mortality of the disease through high quality medical

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com2tag:blogger.com,1999:blog-1446637218830257936.post-79907333817456292582008-10-06T23:40:00.000-07:002008-10-17T11:35:01.543-07:00

After having a Sickle Cell crisis last year I experienced a new complication of Sickle Cell Disease. I experienced pain and swelling in the upper left part of my stomach. My doctors said that my spleen was swollen and that it should go down soon. Nine months later, it’s still swollen and tender to any pressure or touch. This problem isn’t going away.I’d heard about spleen problems being

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-89468153572156526972008-09-30T03:08:00.000-07:002008-10-02T13:48:15.439-07:00

News report from Oklahoma regarding the Sickle Cell Care Walk for Life. This report focuses on Joy Harrell, a mother, wife, and Sickle Cell patient.We must remember, thousands of people around the world suffer from Sickle Cell Disease. Let's keep walking and talking to bring attention to this disorder. Communication = Attention = Funding = Cure

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-59921473877389725532008-09-20T19:57:00.000-07:002008-10-16T12:38:08.581-07:00

SUFFERING IN SILENCE Art by NazaireOrder t-shirts of Nazaire's art at www.sicklecellart.com(Maximize for better view)

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-78682652039722628952008-08-29T09:24:00.000-07:002008-10-17T11:35:43.588-07:00

Avascular Necrosis is one of many complications of Sickle Cell Disease. This condition is a result of temporary or permanent loss of blood supply to bones. Without blood, bone tissue dies and causes the bone to collapse. If dead bone tissue is near a joint (hip or knee), the joint may also collapse.Is this painful? YESI was diagnosed with Avascular Necrosis (also known as Osteonecrosis) in 1992.

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-16075658729822003162008-08-22T14:14:00.000-07:002008-08-22T14:20:47.089-07:00

Doctor's at Emory University and Harvard Medical School are working for long-term solutions to find a cure for Sickle Cell Disease, not just a treatment.Chris is one story about receiving a bone marrow transplant. The long-term results are yet to be seen. But, let's cheer on the doctors for making these treatments available.

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-35756174868347094332008-08-02T15:42:00.000-07:002008-08-12T11:25:49.688-07:00

This is not uncommon. When admitted into the hospital, some Sickle Cell patients encounter doctors unfamiliar with Sickle Cell Disease. Some doctors may think you're on drugs, over-reacting to pain, or unsure of how to treat you. The more we talk about Sickle Cell Disease, the more doctors will investigate this disease and educate themselves.

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-73924201519435274702008-07-24T14:21:00.000-07:002008-10-17T11:32:25.847-07:00

Healthy DNA is taken from stem cells that are in the cord blood of healthy pregnant women. Stem Cell research is going on at Johns Hopkins and other hospitals around the country.Read about this story at:http://www.cordblood.com/cord_blood_banking_with_cbr/realpeople_realstories/davis/index.asp

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-15023685322408564682008-07-08T20:37:00.000-07:002008-07-14T03:11:05.912-07:00

My first story is about Preston Carson. Born January 27, 1949 in Evansville Indiana, Preston was the second of nine children of Cora and Charles Carson. He weighed 9.5 lbs, but his mother Cora sensed something was wrong. The first six months of his life were normal, but Cora noticed the whites of his eyes were sort of yellow. He was first diagnosed with Yellow Jaundice with low blood count.

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-64750350827753600122008-07-06T15:15:00.000-07:002008-07-06T15:20:53.233-07:00

Tell me your story, email it to info@pallenjones.comI will feature one brave story each week of people living with Sickle Cell disease. Our stories will inspire, encourage and educate all of us.Let each one, teach one.

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-19682424108501344152008-06-30T18:14:00.000-07:002008-10-17T11:33:12.109-07:00

According to the Washington Post, May 29,2008, Johns Hopkins Institute researchers developed a human stem cell line containing the mutation associated with sickle cell anemia.They say, "One challenge to studying blood diseases like sickle cell anemia is that blood stem cells can't be kept alive for very long in the lab, so researchers need to keep returning to patients for more cells to study."

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-83887953706132206762008-06-26T12:51:00.000-07:002008-10-17T11:36:46.911-07:00

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com1tag:blogger.com,1999:blog-1446637218830257936.post-85027402032977771452008-06-24T12:33:00.000-07:002008-11-06T20:00:30.714-08:00

This is the red blood cell in a normal round shape, as well as, in the elongated sickle shape.

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com0tag:blogger.com,1999:blog-1446637218830257936.post-21657622432851297332008-06-02T14:14:00.000-07:002008-06-29T01:00:06.495-07:00

This blog is intended for information and communication between those people living with Sickle Cell disease.

Our Voicehttp://www.blogger.com/profile/15690779280531433936noreply@blogger.com2