New Years Resolution

(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 Disease.

On Janurary 7th, 2012 The Sickle Cell Foundation of Orange County (CA) is sponsoring a Replenishment Blood Drive and Bone Marrow Screening in honor of Charon Simmons. The public and many friends of Charon are encouraged to donate blood in support of his journey back to health. (contact info@scdfoc.org for more information)

Charon's story reminded me of the millions of people (world-wide) who also suffer with Sickle Cell Disease and need blood transfusions.

If you're one of those people who makes a New Years resolution, add to the top of your list for 2012....
1) Give the gift of life - give blood.

If you can't give blood (you suffer with health issues), then plan a blood drive and have your friends and family support you. We can all help somebody who's hurting this new year, let's put some effort in being our brother's & sister's keeper.

Have a blessed New Year!!!!!!!!!!!!
www.redcross.org

Iron Overload

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 carry more oxygen. This is one reason we feel better after a getting a transfusion.

The blood in the transfusion also puts iron in our body. Over time, this iron builds up and our body has no way to get rid of it. It does not eliminate iron like other waste. This is Iron Overload (IO).

We can still have anemia AND have too much iron.

Too much iron can build up in our body (after 10 or more transfusions), even if a long time has passed between transfusions. (I DIDN'T KNOW THIS)

Iron Overload (IO) can lead to serious health problems, both now and later. Too much iron in your body can: (1) weaken your immune system, (2) cause sexual dysfunction or infertility, (3) heart failure (4) Liver damage (cancer), and (5) Diabetes.

Find out more information on Iron Overload (IO) and what actions you can take to be transfusion smart.

www.betransfusionsmart.com

RedCross.org

Young People With Sickle Cell Need Help Too!

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 high.

These young people in transition need our support, love and encouragement. They also need to see examples of older adults "living" with Sickle Cell Disease and living well despite the difficulties.

Here's some help and resources:

Teen Health - Childrens National Medical Center Transition Education

Teen Health - KidsHealth.Org - Transitioning Your Medical Care

Pyschosocial Help - New Jersey Department of Health

Living with your teen - North Carolina Department of Health

Global Sickle Cell Awareness

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 became prominent.

What I am interested in is bringing awareness to the fact Sickle Cell Disease is found all over the world.

Yesterday, I read a story about a family from Cameroon who were being deported from England because they were illegal immigrants. That is not the whole problem; the issue was that their three-year old son suffered a sickle cell crisis and deportation proceedings were still continuing. The fact that the child was in the hospital in England, “not moving, with high fever” did not stop deportation proceedings. Education, compassion and awareness was needed in this case.

I read a story about a footballer born in France, playing football in Spain. While he was training with the national team in the high-altitude commune of Tignes, it was announced that he was dropping out of the squad due to suffering severe intestinal pain and stomach cramps as a result of the altitude. A follow-up medical check revealed that the injury required a significant amount of rest. His football club in Madrid later revealed that the injury was due to asthenic syndrome, a secondary condition related to sickle-cell anemia.

Shall I go on?

In these examples, Sickle Cell Disease appears in two different countries. As we bring awareness to this “blood disorder”, maybe that family from Cameroon might have been allowed to stay (compassionately) because their young son was too weak to travel.

And, the footballer in France might have been tested at birth, or prior to playing football like the NCAA does in the USA. He would have then discovered he had Sickle Cell Disease and also, through education, known he could not tolerate high-elevations.

We need global awareness, information, and communication. No shame, no stigma, no medical racism, AND no problem.

Did you know Sickle Cell Disease is found in many nationalities?

(Per Spanish reviewer) ¿Quién está en riesgo?
Muchas nacionalidades: Afro-Americanos, Latino Americanos, Italianos, Griegos, Árabes, Africanos, Caucásicos, Indios.

Yes, in Latin countries too!

Airline Travel & Oxygen

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, “Patients with Hemoglobinopathies Require Continuous Flow Supplemental Oxygen During Commercial Airline Flights.” In this letter Dr. Omoigui identified the results of a study he performed on people with sickle cell disease while they flew on commercial airlines.

The article is complex, but the conclusion is very clear. People with diseases of the hemoglobin (i.e. sickle cell disease) lose oxygen levels during airline flights. Less oxygen levels cause secondary issues like; avascular necrosis, splenic infarctions and bone pain.

Dr. Omoigui suggests, for flights longer than one hour, that commercial airlines should be mandated to provide supplemental oxygen (via nasal cannual). This is wishful thinking, asking airlines to give anything...for free. Maybe, they could be held accountable to comply with the ADA laws to provide "reasonable accomodation" for people with disabilities?

We patients with sickle cell disease could ask our doctors, when we consider flying longer than one hour, for an oxygen prescription. I know I will. I love to travel more than I am vain about carrying a portable oxygen tank with nasal cannula attached.

Check out Dr. Omoigui’s webpage for helpful pain care information:

L.A. Pain Clinic

An Artist Voice for Sickle Cell Disease

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.

Faces of Sickle Cell Disease

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 (cafe, park, museum, etc). The session takes less than 1.5 hours, during which Dr. Rowley takes photographs of the person and makes an audio recording of the conversation about living with sickle cell disease. People can take the photo with a significant other, child, pet, etc. - whatever they prefer.***

If you are interested in lending your face & story in this exhibit.
email: bella@cayennewellness.org (also, let her know where you are)

or call

Cayenne Wellness Center and Children's Foundation
PO Box 3856
Glendale, CA 91221
818.377.5120 tele
818.840.9485 fax
www.cayennewellness.org

Dr. Oz Raises Awareness of Pain in America

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 his producers for raising awareness of the need for improved pain management in America!

If you have faced barriers to effective pain care, or have been told that pain is “all in your head,” be sure to share your story at the following link: www.doctoroz.com/contact
If you missed the show, you can view it online:

Dr.Oz show

Keep up with the American Pain Foundation on Facebook.
and Twitter @americanpain for the latest pain news and information.

NHLBI New Sickle Cell Awareness Efforts

Check out this link to the NHLBI new information center:
Sickle Cell Information Center

Also,

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

True Sickle Cell Warrior - Adeja Johnson

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 complications of this treatment and the long-term effects are not fully known. Even with this procedure, there is still no "reliable" cure.

But Adeja and her family stood out in front of this battle with courage AND aggressiveness. As only a warrior would do, Adeja fought well and we are all better off because she did.

God bless you Adeja, I'll be looking for you in heaven.

See Video
Adeja Johnson Foundation

Living Longer

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 where doctors finally spoke to me about the disease and what it meant to live with it. I was twelve.

Fast forward to 2011, I’m fifty-one years old and many of us pediatric patients are still alive. We’ve lived passed the prognosis of death (14 years) and we are now in our fifties and sixties. This is where the story gets complicated. People with sickle-cell disease (since 1972) received better treatment and that extended our lives.

Currently, in America, healthcare organizations (and insurance companies) do not know how to deal with aging sickle-cell disease patients. Now that we’re living longer, we’re dealing with long-term complications such as; heart disease, stroke, renal failure, retinal detachment, leg ulcers, etc. etc. etc.

In addition, many sickle-cell patients are on Medicare and Medicaid. Since there are no clear guidelines on how to treat these aging patients, Medicare and Medicaid are not approving or reluctant to approve treatment & medications.

The National Heart, Lung, and Blood Institute (NHLBI) has recognized this issue and is addressing it by creating “Treatment Guidelines” for the medical community.

By 2012, the healthcare community will know “what the heck” to do with aging sickle-cell patients. They will have guidance on treatment and care of adult sickle-cell patients, just as they did for pediatric patients in the 1970s.

There is still work to be done to get Medicare and Medi-cal to NEVER DENY treatment or medication for people suffering with sickle-cell disease. But that’s a battle to be waged toward our elected officials by notifying them, “This is unacceptable!” First things first.

People with sickle-cell disease are living longer, thank God, and now the healthcare community will get information about treatment and care for us. All we want is to live happy and healthy lives, now someone’s willing to help.

Thank you NHLBI for taking the lead in this effort.

(Information from teleconference meeting held with NHLBI and various Sickle-cell Disease Advocates and bloggers September 2, 2011)

listen to meeting @ (855) 859-2056 #97067391, (give your name and Our Voice blog)

September - National Sickle Cell Awareness Month

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) report on Management of Haemoglobin Disorders.

Answer: Yes

The Best Therapy

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 rigors and rewards of traveling with a disability.” This article got me to thinking, we who suffer with Sickle-cell disease should also enjoy life despite our condition….why not travel?

Heidi says, “Travel emphasizes the big, wide world, making it easier to not focus on your infirmities. The aches, pains, and inconveniences of chronic illness or disability temporarily take a backseat to the adventure ride of new sights, sounds textures and tastes.”

I say, “Amen to that sister!”

When we (who suffer with chronic illness) travel, we have to be smart and prepared. I thought I’d share a few of my travel tips, in addition to Heidi’s found in the Westways Magazine article.

1. Plan Ahead –

a. I check weather conditions so that I can dress appropriately. If I get too cold or overheat that can trigger me to have a ‘crisis’.

b. I check the elevation to make sure it is not over 4,000 feet (anything over 3,500 feet makes me begin to feel light-headed and over 4,000 begins elevation sickness associated sickle-cell)

c. I check travel distance or time. If it is a flight, I check how many layovers (stops) my flight might include. The more time it takes me to travel the worse it is for me.

d. I look for non-stop flights with larger airline companies that have larger airplanes. This way I'm confortable. If I have to travel for more than 5 hours I experience leg swelling and pain.

2. Schedule Wisely – I always pace my travel schedule to include rest. The first day AND last day of every trip is my rest day. If I’m travelling with other people I let them know, “I’m taking a nap,” and then I slip away for a few hours….they will understand.

3. Food/Water – If I need certain things to eat or drink I buy them when I arrive at my destination. If it's bottled water, I buy large jugs and keep them in my room. I carry small bottles of water with me everywhere. I make sure that I don’t eat fast food (too often) because it makes me feel dehydrated and sluggish.

4. Pace Activities - I don’t include too many activities in one day. I look at what events are planned and I decide how much I can do. I don’t try to keep up with anyone. I enjoy travel, but I enjoy good health even more.

My conclusion is that I may just sit and watch a sunset, but that’s just fine with me.

ALERT - Pain Medication Recall

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 and caffeine (generic Fioricet) because some bottles may contain different strength tablets, resulting in individuals taking more than or less than the intended doses of active ingredients."

See lot number information and read the entire article:
American Pain Foundation article
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Higher Doses Justified for SCD Patients

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 patients was 3 to 10-fold shorter compared to morphine clearance in non-SCD patients."

In english....FOR SCD SUFFERERS PAIN RELIEF DOESEN'T LAST AS LONG!!!!

Check out the entire article at:
www.newswire.com/articles/higher-doses-of-morphine
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World Sickle Cell Awareness Day - June 23-24, 2011

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 impact of sickle cell disease(SCD) and the importance of uniting global support for promoting and improving the health of persons with SCD through "increasing global action to reduce child mortality in SCD."

The celebration will begin on Thursday, June 23rd with a national press conference and private reception. It will culminate on Friday, June 24th with presentations by a number of SCD experts and panel discussions with several international representatives.

For more information and registration:

www.scdworldday.eventbrite.com/

Meditation May Reduce Pain

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-minute training sessions, participants were taught a meditation technique known as focused attention, which involves paying close attention to breathing patterns while acknowledging and letting go of thoughts.

As part of my pain management I have also used the technique of “mindfully letting go of thoughts” as a way to manage pain.

However, I believe there is something that should be meditated on, the Word of God. As I let go of painful/hurtful/self-pity/anger filled thoughts, I meditate on the promises of God to help, heal and restore me.

Here are a few bible verses that attest to what I believe:

a. Hebrews 11:6 - “And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.”

b. Psalms 30:20 - “O LORD my God, I cried out to you, and you healed me.”

c. Jeremiah 17:14 - “Heal me, O LORD, and I shall be healed; Save me, and I shall be saved, for you are my praise.”

d. Proverbs 17:22 - “A merry heart does good, like medicine, but a broken spirit dries the bones.”

e. Philippians 2:5 - “Let this mind be in you which was also in Christ Jesus.”

My conclusion:

God has made promises of health and peace, both physically and spiritually. If we meditate on His word (and) promises, we will receive the peace (he promised), the joy (that comes with knowing Him) and the help (when we suffer).

This is what I know for sure; pain may endure for a night, but joy comes in the morning.

Meditate on that.

Kidney Infarctions

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," which causes kidney function changes like:

a. loss and shriveling of tubules
b. thickening and scarring of tissue
c. inflammation.

Specifically, long-term use of the analgesic has been linked to death of kidney cells.

2. Renal Failure is the result of a kidney infarction. This is when a kidney artery is being blocked, compressed, ruptured by trauma, or interruption of blood supply which causes the cells to die.

The result of this damage is also known as kidney failure. Kidney failure is a medical condition in which the kidney’s fail to adequately filter toxins and waste products from the blood.

Problems frequently encountered in kidney malfunction include abnormal fluid levels in the body, increased acidity in the blood, abnormal levels of potassium, calcium, phosphate, and (in the longer term) anemia, as well as delayed healing in broken bones.

Depending on the cause, there may blood in the urine (people with sickle-cell should always lookout for this problem) and protein loss in the urine. Long-term kidney problems have significant repercussions on other diseases, such as cardiovascular disease.

Renal failure can be divided into two categories:

1. Acute kidney injury - acute kidney failure usually occurs when the blood supply to the kidneys is suddenly interrupted or when the kidney becomes overloaded with toxins.

Unlike in chronic kidney disease, the kidneys can often recover from acute failure, allowing the patient to resume a normal life.

2. Chronic kidney disease (CKD) can develop slowly and initially, show few symptoms. Renal function measurement is persistently poor. Sickle-cell complication falls into this category.

Where there is little renal function, dialysis and kidney transplantation may be treatment options.

How is chronic renal failure (kidney disease) found?

a. Measuring flow rate of filtered fluid through the kidney.
b. Kidney size.
c. Measuring levels of Creatinine (high).
d. Measuring acidity in the blood (increasing).
e. Measuring levels of Potassium, Calcium, Phosphate (abnormal).
f. Blood test for anemia - less than the normal quantity of hemoglobin (red blood cells)

BEWARE:

People with Sickle-cell disease have to be PRO-ACTIVE in their health maintenence. We should keep track of blood test results. Check to see if levels are too high or too low and notify your doctor if you notice blood in your urine.

Overuse of common drugs such as aspirin, ibuprofen, and acetaminophen can cause chronic kidney damage. Pace yourself when taking these medications, AND drink lot’s of water!!!!

Links:
www.wikipedia.org/wiki/Sickle_cell_nephropathy
www.wikipedia.org/wiki/Renal_failure

Kandi Burruss Speaks Up For Sickle-cell

Understanding Pain

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 Magazine March 2011

To Tell or Not to Tell

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 relax, get well, and come back to work after two weeks with my head held high.

This is our dilemma, to tell or not to tell.

There are laws that protect people with disabilities. Sickle cell is considered a disease that disables and all of these laws protect us too. The American with Disabilities Act gives (us) rights to work without fear of being fired, passed over for promotions, reduced pay or lack of training.

Check out the Disability Act and know your rights to live.....and tell.

Americans with Disabilities Act

- http://www.ada.gov/

- http://scinfo.org/world-wide-resources/americans-with-disabilities-act

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Your Chance To Speak

Information From: The American Pain Foundation

The 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 Act in 2010, Congress has commissioned the Institute of Medicine (IOM) to convene a committee to review pain research, care and education and explore ways to improve pain treatment in the United States.

Now is the time to tell your story and make your voice heard! Act now and share your individual experiences with pain and how it affects your life, including:

Barriers that have prevented you from receiving effective pain care,
Stigmas you have endured as someone struggling with pain, and
Experiences (positive and negative) you have had when seeking treatment

Go to link and tell your story. Help everyone by telling anyone!!!

Public Comment Form

Living

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 general life issues like rent, food and health care, living with sickle cell disease is hard.

Just getting up with a positive attitude is sometimes difficult. Hoping for any kind of future is sometimes senseless, and dreaming about achieving any goal can be futile. But people "living" with sickle cell disease MUST push on.

Some days are worse than others. The relief of pain medication doesn't soothe sorrow that comes from a life of suffering. Getting tired of being tired drains any hope we fight to hold on to.

But we must live on.

Living with sickle cell disease is our cross to bear, everybody has one. We choose to lift this cross fighting everyday with strength, positive thinking and perserverance or we don't. We give in or we give up this fight, it's our choice.

My personal choice is fight and win. Keep dreaming, keep believing, and keep getting up. Acknowledge the pain, get a remedy and move on. Cry if I want to cry, then wipe my tears and start over again. Pray about everything and believe there is a God who cares. Smile at the world and lend a hand to someone else hurting.

That's my answer to living with sickle cell disease. What's yours?

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