Monday, November 26, 2012

Pre-Existing Condition - Affordable Care Act & Sickle Cell Disease

According the the US Health & Human Services (HHS) the Obama administration moved forward today (November 20, 2012) to implement provisions in the health care law that would make it illegal for insurance companies to discriminate against people with pre-existing conditions.

The Affordable Care Act (aka Obama Care) beginning in 2014, prohibits health insurance companies from discriminating against individuals because of a pre-existing or chronic condition.

This is wonderful news for people in the US living with sickle cell disease. We will NOT be penalized by denying medical coverage or being charged more for health coverage because we have a disease. This sounds very fair to me!!!!!

Read for yourself:

HHS News Affordable Care Act - general info
Features of the new healthcare law

Tuesday, October 16, 2012

Treating Sickle Cell Disease With Transfusion Therapy

From time to time I get request from people to write guest blogs on the subject of Sickle Cell Disease and associated treatments. I encourage my readers to read, research and write about sickle cell.
I do not endorse any one treatment or the guest blogger's comments, but I do want my readers to be involved in the process of treatment analysis.
I have my personal opinions about the subject of "Transfusion Therapy" and its associated risks, i.e. causing Iron Overload (damage to liver, heart & other organs), Alloimmunity (immunity against transfused red blood cells & antibodies that target and destroy the transfused blood cells), Hyperviscosity (sticky blood which can cause stroke, higher blood pressure), and Transmission of virus' (more transfusions could = more chance of transferred blood infection). But, I'll keep my opinions to myself.
What I will say is; "Know the benefits AND risks with any treatment or 'cure'. Talk to your doctor and weight them for yourself, then decide what treatment is best for you."   
This guest blogger is Alex Kerwin, a Michigan-based freelance writer from Central Michigan University. Outside of writing, he helps organizes support groups for those struggling with addiction.

"One of the leading treatments for sickle cell anemia is transfusion therapy.
The Seriousness of Transfusion Therapy
Transfusion therapy can save the life of a patient with sickle cell anemia. In other cases, transfusion therapy can protect organs from becoming damaged by the disease. The treatment is very serious and requires much attention to detail. Any doctor without extensive knowledge of sickle cell anemia may wind up causing new complications that would otherwise never occur.

Red blood cells are very complicated to handle in a medical fashion. However, if the procedures are performed correctly, the transfusion therapy will have very beneficial results. Transfusion therapy will cause a suppression of circulating cells that have been deformed by the disease. This helps to reduce episodes of pain and other symptoms by introducing healthy and well shaped red blood cells into the body.

The Many Types of Transfusion Therapy

Transfusion therapy can be performed in a variety of ways. Simple transfusion, erythrocytapheresis and partial exchange are all methods of transfusion used for specific cases. The most extreme cases would usually benefit from a treatment of erythrocytapheresis. Whichever specific method is used, transfusion works by introducing new cells into the body. This blood can be of any age, because age usually has no impact on the blood.

The major debate about transfusion therapy is related to the lack of knowledge of how the body may react to cell transfusion. There are many potential dangers when receiving cell therapy. The main goal of transfusion therapy is to add more healthy red blood cells in order to remove the threat of the sickle shaped cells. The problem is red blood cells contain iron. When a patient receives numerous blood transfusions, they may accumulate too much iron in the body. Transfusion therapy is a serious operation that should be discussed at length with the doctor before any decisions are made."

Thank you Adam, I really appreciate your time and effort to educate people about this therapy.

Saturday, September 22, 2012

Ryan Clark - From Sickle Cell Disease Tragedy To Triumph

While intellectuals are "writing" abstracts on how to care for people with Sickle Cell Disease, Ryan Clark is "doing" something about it.

Ryan knows first-hand the effects of loss that surround living with sickle cell. As he states, "The loss of my sister-in-law & my own life-treatening experience with sickle cell gave me insight into the intense agony people with the disease go through daily."

What Ryan is "doing" is through his foundation Cure League which is tackling sickle cell.

Their goals are:

"Work together to fund research studies and develop sickle cell disease educational outreach with end goals of:
  • Finding effective new sickle cell disease treatments
  • Identifying a cure for sickle cell disease
  • Expanding patient access to comprehensive sickle cell disease care (in PA)
  • Increasing public awareness and reducing the stigma associated with sickle cell disease.
This is putting money, time & talent where your mouth is.

You go get'um Ryan Clark & Cure League. I'm cheering you on over here and people with sickle cell disease thank you in advance.

Now, go win that Super Bowl for PA!!!!!!


Tuesday, September 4, 2012

September - Sickle Cell Disease Awareness Month (2012)

It all begins this week.

The New York Mets is sponsoring a wonderful event at Citi Field Stadium on September 8, 2012. New Yorkers will see, hear and support Sickle Cell Disease awareness through their favorite sport, baseball.

On September 15, 2012, The Hina Patel Foundation is sponsoring a Walk/Run to support Sickle Cell Awareness in California.

See pictures of this event at

The month is full of activities and events to bring awareness to sickle cell disease, as well as, much needed funds to many sickle cell disease related non-profit organizations for the services they provide.

Whatever you do this month to support Sickle Cell Disease Awareness, know that there are people suffering all over the world with no voice, no influence or power. They rely on people like you and me to SPEAK OUT, STAND UP, GIVE our TIME, TALENT & MONEY to support awareness and services for people with Sickle Cell Disease.

I don't have a lot of money, but as long as I have breath I will lend my voice, and anything else that doesn't hurt, to people living with Sickle Cell Disease.

Happy September!!!!!!

For more info about Sickle Cell Disease check out

Friday, August 10, 2012

NHLBI Seeks Public Comment on "Draft" 2012 Sickle Cell Management Treatment Guideline

The National Heart, Lung, Blood Institute (NHLBI) is requesting public comment on the "New" treatment guideline for adults with sickle cell disease. (due August 31, 2012)

The original document (dated 2002) tells the medical community "how to treat people with sickle cell" AND it needs to be updated.


Check out NHLBI website for more info on how to add your comments (or see links below)

Public Review and Comments Due: August 31, 2012

Disposition of Public Comments
How to Review and Comment
Review and Comment Form, Excel (xls) file, 44 K (Form must be returned by email attachment to

Being Pro-active about "OUR" health, this OPPORTUNITY is "OUR" chance to tell doctors what "WE" think should be done to treat Adults with Sickle Cell Disease!!!!!!!!!!!!!!!!!!.

See the current Management of Sickle Cell Disease (2002) version

Thursday, August 2, 2012

Sickle Cell Plain Talk

As a patient with Sickle Cell Disease, I often hear words like “Thrombosis” and they mean absolutely nothing to me. Doctor’s use terms like this and expect us to understand. What they don’t realize is that we “patients” need straight talk. We need them to make it plain, and basically, tell us the details in regular terms.

Once, when I questioned a doctor who was explaining something very important to me. I asked her to "make it plain" and she got irritated. Her facial expression said it all, but I wasn’t affected. I asked for and expected an explanation in plain talk.

Most of my doctor’s appreciate my pro-active health management style, some don’t. One reason I started this blog was to speak in terms that everyone could understand. I try to breakdown hype words like "cure" and define words like “Thrombosis” so that we can understand what it is and how it affects us.

FYI - Thrombosis is a blood clot that blocks the flow of blood. If blood flow is blocked to tissues, oxygen supply is reduced. If oxygen is reduced too long then tissue cells begin to die. For people with sickle cell this is important because our blood flow can be (and usually is) blocked by sickled red blood cells. The last thing we want is for our legs, arms, internal organs, or any part of our body to not get enough oxygen.

Also, deep vein thrombosis (DVT) is the formation of a blood clots within a deep vein leading past our hips. A blockage here can be life threatening.

As always, the information I relay is not to scare anyone or over glamorized our physical limitations. I believe “Information is Power.” If people take information and use it to manage their health, better communicate with their health care providers and become educated about their bodies, then we can be pro-active in managing our health.

Learn about your body, how it works, what affects it, and how you can improve it. Don't be afraid to know more, talk to your doctor and ask them to “make it plain.”

Tuesday, July 10, 2012

Health Equity & Sickle Cell Disease

I'm taking my gloves off and getting serious about this battle.

Sit down, get a cool drink and follow me on this journey to fight for equitable care and treatment for people with sickle cell disease.

The U.S. Department of Health and Human Services (HHS) - Center for Disease Control and Prevention (CDC) has four goals in its Healthy People 2020 Report. (1) eliminate preventable disease, disability injury and premature death; (2) achieve health equality, eliminate disparities and improve the health of all groups; (3) create social and physical environments that promote good health for all; and (4) promote healthy development and healthy behaviors across every life stage.”

They even have a US government Act associated to make these goals a reality, HR 2954 - Health Equity & Accountability Act.

What a wonderful notion; health equity, eliminate disparities and improved health to all. There is one problem with this wonderful notion, it DOES NOT INCLUDE people with SICKLE CELL DISEASE.

Why? I believe research data is being overlooked.

No one wants to talk about death or disability from complications of sickle cell disease, but these facts are real so I must address them. We hear about the loss of a loved one, friend, or associate and are saddened by the news. Thinking about this fact, we can also assume that a person with sickle cell disease has suffered most of their life. This too is sad.

Data associated with the number of deaths and disability related to sickle cell disease is not tracked by any government agency. Data is collected for heart disease and stroke at a national government level, however, there is no data collected for sickle cell related stroke deaths, or sickle cell related heart attacks. What about pneumonia? Data is collected for respiratory infection deaths, but Acute Chest Syndrome, a respiratory complication of sickle cell disease is not tracked either.

Why does this matter?

CDC’s Healthy People 2020 goal to; “achieve health equality, eliminate disparities and improve the health of all groups,” lacks the data needed to justify funding to include people with sickle cell disease. The “group” known as “adult sickle cell patients” is left fend for themselves in a national healthcare system that is inequitable and full of disparities. Just ask about emergency room care, there are horror stories.

How could this have happened?

One area to consider is The World Health Organization (WHO) international classification of diseases and related health problems. Sickle cell disease is classified in Section III - Diseases of the Blood. I see a problem with classifying sickle cell into one category. People with sickle cell are affected by many more “related” sections of this classification. These sections are:

I – Infection (pre-5yrs increased infection risk, spleen dysfunction).
V – Mental Disorders (complications of stroke & functional impairment).
VII – Diseases of the Eye (retinal detachment).
IX – Disease of the Circulatory System (heart attack/stroke).
X – Disease of the Respiratory System (acute chest syndrome).
XI – Diseases of the Digestive System (gallbladder, liver).
XII – Disease of the Skin (leg ulcers).
XIII – Disease of the Musculoskeletal System (avascular necrosis, osteoporosis).
XIV – Diseases of the Genitourinary System (priapism).

Can you see the problem?

Globally, people with sickle cell disease fall into too many categories to maintain adequate health related data. Sickle cell disease is responsible for more disability and deaths than are recorded. No government agency can keep track of the health related death and disability caused by this disease.

The CDC Health Disparities and Inequalities Report (2011) and CDC’s Health, United States Annual Report (2011) released death rates in America and health trend statistics. Of course, sickle cell disease related death or disability data was nowhere to be found. Measuring by the standards of The Healthy People 2020 report, this qualifies as a health disparity to me.

What is a solution in America?

Include "Sickle Cell Disease" in HR 2954 - Health Equity & Accountability Act. (Cystic Fibrosis is included, however, it affects less people than sickle cell disease). This would target sickle cell disease to receive equitable funding for treatment, care & research.

In order for CDC to achieve their goal to; “(1) eliminate preventable disease, disability injury and premature death; (2) achieve health equality, eliminate disparities and improve the health of all groups; (3) create social and physical environments that promote good health for all; and (4) promote healthy development and healthy behaviors across every life stage,” SICKLE CELL DISEASE MUST BE INCLUDED IN THE CONVERSATION AND DATA.

WHO Classification of Diseases
Healthy People 2020
Health, United States Annual Report (2011)
Health Disparities and Inequalities Report (2011)

Monday, July 2, 2012

The Martin Center "Join The Chain-Stop The Pain"

Excerpt from keynote address at The Martin Center's "Join The Chain-Stop The Pain" conference in Indianapolis, Indiana.

Monday, June 11, 2012


Ok, I’m a girl so I wouldn’t know anything about Priapism. It affects men with sickle cell disease and it is very painful.

People don’t talk about things that are private, but young men with sickle cell disease need to know what’s happening to their body. Priapism could become very serious and cause irreversible damage to their body. 

Being that education and information is my mission, it is only natural that I find out more about Priapism, which is a painful complication of sickle cell disease.

With eyes closed, and mind open, here’s what I found out about Priapism:

Priapism is a condition in which the penis has an abnormal erection that does not go away after several hours without sexual stimulation. It is usually painful and caused by a non-flow of blood in the penis that makes it hard and painful. Serious problems can result from this painful condition.

Severe episodes of prolonged erection need evaluation by your doctor. Call the doctor if persistent erection lasts more than 3 hours or is extremely painful. Temporary blue discoloration of penis is a very serious concern.

Treatment may include fluids (hydration), pain medicines, treatment by a urologist, blood transfusions or blood exchange transfusion. In severe cases surgery is needed by draining fluid from the penis.

Potential complications include damage to the penile tissue (ischemia), clotting of the blood retained in the penis (thrombosis), and damage to the blood vessels of the penis which may result in an impaired erectile function or impotence. In serious cases, the ischemia may result in gangrene, which could necessitate penis removal.

According to WebMD, if Priapism begins, home treatment tips include:

• Urinating often to avoid feeling the need to urinate. Don't wait until you feel the need.
• Taking a warm bath.
• Drinking as much water and other fluids as you can.
• Seek emergency treatment, if the pain is especially severe or the problem doesn't go away within 3 hours.

My conclusion: God help our men with sickle cell disease. They deal with pain I will never understand!!!!

References: (For more information)

Wikipedia - What is Priapism?

Web MD Home Treatments

Web MD What is Priapism?

American Urological Association

National Library of Medicine – National Institute of Health (NLM-NIH)

Thursday, May 24, 2012

Sickle Cell And Acute Chest Syndrome

Acute Chest Syndrome (ACS) is a complication of sickle cell disease. It is common and seen in people with sickle cell who were hospitalized for another reason. ACS is a form of sickle cell crisis. The crisis is often initiated by a lung infection.

ACS occurs when the circulation of blood vessels is blocked by sickled red blood cells, causing a restricted blood supply to lung tissues, which causes a shortage of oxygen and glucose. This could result in dysfunction of lung tissue.

Since oxygen is carried to tissues in the blood, AND is needed to keep all body tissues alive, insufficient oxygenated blood supply causes ALL tissues to become starved of oxygen. The result could be damage to other parts of the body.

The most common (initial) complaint is chest pain, and associated with symptoms like fever, cough, mucus, or shortness of breath.

Treatment includes antibiotics to help common infection like strep and pneumonia (fluid in lungs), pain control, and blood transfusion.

Recurrent episodes may cause irreversible lung damage or overall death of tissues in the body due to lack of oxygen. Acute Chest Syndrome may result in death, and is one of the most common causes of death for sickle cell patients.

When WE get sick with cold, flu or infection, it could also mean there is more going on in OUR bodies. If you have symptoms of flu, fever, cough with mucus and/or shortness of breath please seek medical attention.

Friday, May 4, 2012

Stem Cell Cure For Sickle Cell (Or Not?) Part II

I am finally home from travelling and speaking on behalf of people living with Sickle Cell Disease. My conclusion is not good. We (people with Sickle Cell) have the same concerns....and it's not looking good.

I will address these issues soon, but I wanted to finish my series on "Stem Cell Cure For Sickle Cell (Or Not?) Part II"
We hear in the news "Sickle Cell Cured!!!!" then.....nothing. We don't hear about complications, infections, secondary diseases caused by "treatment" or the true life-span of those "cured" children AND adults.

This is why I needed to finish exploring this "cure" subject. Here goes:

Stem Cell Cure For Sickle Cell (Or Not?) Part II

1. CHILDREN - Today, in children 250-300 stem cell bone marrow transplants are done in US. Doctors report a 90% success rate “IF AND ONLY IF” done on children with “perfectly matched sibling stem cell bone marrow donor”.

(Personally, I have NOT seen any long-term results data on these children’s quality of life, future complications from the aggressive chemotherapy treatment or immune suppressing medications, or the mortality rate after their “successful” stem cell bone marrow transplant)

I’m just saying.

In children, when there is a non-sibling stem cell donors (from the limited supply of National Bone Marrow Donor Program or Cord Blood Bank) there is a higher risk of immune diseases and transplant rejection which causes the body to attack itself. Over 5% reject the graft (transplant) & sickle cell comes back. National bone marrow donor register is also limited.

Cord blood stem cell donors are usually from a family member. This is very expensive, does not always cure sickle cell, and some patients die in the process with immune diseases caused by the aggressive chemotherapy and immune suppressing drugs.

My conclusion: Parents (and) patients must weight the benefits vs. risk with a FULLY INFORMED decision.

2. ADULTS - In adults, they have higher risk of side effects (immune diseases) and existing complications like previous strokes, eye damage, kidney damage, and bone decay issues like Avascular Necrosis will not be reversed if stem cell transplant is offered.

Answer: Cure in Adults has not proven effective, however future research & clinical trials will include (Genetically) Modified Stem Cell Bone Marrow Transplants.

According to a presentation (2012) by Dr. Donald Kohn at the Human Genome Medicine Program at UCLA, a recent $9 million dollar grant to California Institute of Regenerative Medicine (CIRM) was issued for stem cell “gene therapy” for curing sickle cell disease (in adults). Preparation for clinical trials (getting volunteer subjects) will begin soon.

(The requirements for this clinical trial are: 18 years or older, SCD (SS SThal), have few existing complications (that offset the risks of treatments), no existing matched donor, no existing matched sibling, pass state of health criteria.)

Stem cell “gene therapy” means bone marrow is removed (taken from hip), then “genetically modified” while patient is given high doses of chemotherapy to kill their existing bone marrow, then the modified bone marrow is given back to patient through transfusion directly into blood stream.

MY CONCLUSION:Sickle cell patients are being poked and prodded, clinical trialed and drug tested. In the meantime, we have to LIVE with sickle cell disease. I wish someone would fund Comprehensive SCD Care Centers again…..and help us “live” while you search for a “cure”.

Dr. Donald Kohn at the Human Genome Medicine Program at University California at Los Angeles (UCLA):
Sickle Cell Anemia Stem Cell Gene Therapy
and Bone Marrow Stem Cells

Thursday, April 5, 2012

The Hina Patel Foundation Cares

The Hina Patel Foundation in Bakersfield, CA works to support Sickle Cell Disease awareness and screening programs in India. The quote below is from their recent trip to India 2012:

“Sickle Cell camp in India was a huge success. We went to 5 villages (Zankhari, Chakara, Ambach, Mahuvaria, and Surali) and took samples of 3,732 people.

851 had sickle cell trait, 67 had sickle cell disease and approximately 40% of them were newly diagnosed.

They had pain crisis but due to poverty and living far from the city without transportation. These people usually stayed home and suffered with the pain.

We diagnosed a girl about 8 years of age that could not stand or walk due to multiple pain crisis. This was very sad. Her brother also was diagnosed with the disease.
Our foundation provided education about sickle cell, gave each tested person a personal report about sickle cell with explanations. We provided blood grouping to all 3,732 people. Healthy individuals received a “normal” report card with their blood type and on back of the card it tells them the importance of donating blood (a live blood bank for sickle cell patients).

The 851 sickle cell trait individuals got a card indicating they were a “carrier” and on back of the card it explained what it means to be a carrier. The card also explained that these “carriers” should seek genetic counseling when reaching appropriate age to get married and have children.

The 67 individuals with sickle cell disease were given a card that explains what they must do to take care as far as taking medicine, drinking 10 cups of water, dress warm, do not over exert, etc. Each person was given Folic Acid, Larium and Toradol for pain for 1 month. We also set up a program where they will receive these three medications once a month for entire year along and 4 times per year, they will receive CBC (funded by our foundation).

The doctor I worked with also gave check-ups.

Our goal (Hina Patel Foundation) is to continue screening once a year and to keep funding for medication. There are roughly 8 million people that live in this tribal region of Gujarat who mostly carry the sickle cell gene.”

The Hina Patel Foundation is doing their part to support sickle cell disease awareness, treatment and care. They are an example of doing something……anything for your fellow man, woman and child with sickle cell disease.

Thank you Hina Patel Foundation, the angels in heaven are smiling down on you.

Visit The Hina Patel Foundation website to find out more and to donate to their efforts.

Thursday, March 29, 2012

****** Sickle Cell Awareness ******* One Reader At A Time

I have two important blogs to write.

(1) Is there a cure or NOT? part 2.

(2) The Hina Patel Foundation's work in America and India.

First, I thought I'd add a video about the recent sickle cell awareness & book signing event at Russo's Books in Bakersfield, CA. March 24, 2012

Wednesday, March 14, 2012

Fallen Soldier

Today I was reminded why I speak out about sickle cell disease. I found out that Phyllis Zachery-Thomas, a long-time sickle cell disease advocate and founder of SCD Soldier Network recently passed away.

Phyllis was an inspiration to me and one of the first voices on the internet, that I knew of, telling the world about sickle cell disease. She united people and inspired them to do something....anything.
God bless Phyllis Zachery-Thomas. Her memory lives on right here.

P.Allen Jones

Saturday, March 3, 2012

Stem Cell Cure For Sickle Cell (Or NOT?)

I have read headlines that say, “Cure for Sickle Cell Disease!!!!!!” Then I asked myself, Why am I NOT cured????

I looked around for first-hand reports of people who were “cured,” but no one would speak after getting the cure. One year ago, after an “adult” stem cell clinical trial, I tried to speak to one participant. She wouldn’t (or couldn’t) talk to me. It all seemed a little too fishy.

I needed an answer. Is there a cure for sickle cell disease, or not? In my search, I found a lot of information. It is very complex, but I believe WE need to understand what doctor’s are doing for us AND to us.

I found one good resource in California, a presentation by Dr. Donald Kohn, Director of the Human Genome Medicine Program at University of California at Los Angeles (UCLA).

Based on Dr. Kohn’s presentation, I will write a three-part blog on the subject of “Is there a cure for sickle cell disease?” I will try to break the information into bite size pieces, so WE can understand and digest it all.

First, I’m going to address bone marrow stem cell background, second, what doctor’s are doing for children today, and lastly, what’s coming in the future for adults.

Here goes.

According to Dr. Kohn - 150 newborn cases per year (in Calif.), 9000existing (Calif.), 80,000 in USA, current medical cost = $10,000 - 15,000 per person (per year), and most sickle cell related medical cost are paid by Medicaid or Medical. (really???)

I guess there is a financial reason for the medical community to find a cure for us. And, that’s good!!!!

Part I - Is there a cure for sickle cell? (background)

1. What is the biology of sickle cell? Our red blood cells are packed with Hemoglobin (the oxygen carrying protein). It has 4 proteins, (2) Beta and (2) Alpha chains. On one of the Beta chains (the 6th amino acid) it is mutated (HbS). In conditions of low oxygen (one trigger), the mutated hemoglobin molecule (HbS) attracts to another mutated (HbS) molecule and they stick together. This causes the hemoglobin to go from round flexible shape to rigid sickle shape.

2. In 1982, the first (accidental) cure for sickle cell disease occurred by a bone marrow stem cell implant to treat a patient who had leukemia AND sickle cell disease. The resulting stem cell implant cured the “child” of sickle cell disease by accident. NOTE: I have no information on what ever happened to that patient. If the “cure” lasted, what their quality of life was, nothing.

3. How is bone marrow stem cell transplant treatments used to “cure” sickle cell?
The body makes red blood cells from stem cells in bone marrow or cord blood. Stem cells are transplanted from the bone marrow or cord blood of a donor (hopefully, completely matched to us). The goal is for our bodies to accept the transplant AND make our bone marrow produce (good) red blood cells without mutated HbS hemoglobin.

End Part I

The following video is hard to watch, but necessary to understand how much bone marrow donors go through for us.
How Bone Marrow is taken from donor.

Monday, February 20, 2012

Guest Blog by Jenna Walters

I believe in supporting people who want to advocate for sickle cell disease awareness and education.

Jenna Walters wrote the following blog,"Experimental Treatments for Sickle Cell Anemia" and I support her efforts to participate in this important work.

"Sickle cell anemia is an inherited disorder where the usually round red blood cells become sickle shaped. This causes blockages in the capillaries which leads to episodes, called “crises,” of severe pain in the joints, abdomen, chest and back. The disorder affects mostly people of African descent. Over the years experimental treatments have been used to help ease the symptoms of sickle cell anemia. They include:

Nitric Oxide TherapyInhaled nitric oxide is used to help capillaries to dilate, or open up. This lets the blood flow more easily because it keeps the sickled blood cells from sticking together and forming clots, which can lead to sickle cell crises.

Stem Cell Transplants
Stem cells are cells that can turn into any sort of cell in the body, including blood cells. This sort of stem cell transplant is basically a bone marrow transplant. A donor is found for the patient and their own bone marrow is destroyed through courses of chemotherapy or radiation. The donor’s stem cells are then intravenously fed into the patient in the hopes that they’ll create new, healthy red blood cells. This procedure is usually done on people whose sickle cell anemia has become unmanageable, because it's frankly risky. The patient’s body can reject the donor's cells, which will lead to complications.

Gene Therapy
Gene Therapy is now being explored for diseases ranging from sickle cell to peritoneal mesothelioma. Medical researchers now believe it may be possible to replace a patient’s defective sickle cell gene with healthy genes. They can do this by putting the healthy gene into the bone marrow of the patient. They can also find a way to “switch off” the sickle cell gene while turning on a gene that causes the production of fetal hemoglobin, which would stop the blood cells from sickling. Researchers are also looking for drugs that can support the production of fetal hemoglobin. One of the drugs now under study is Vorinostat.

Possible Clinical Trials - MP4CO therapy
Some researchers believe that combining the drug MP4CO with more traditional therapies can dilate the blood vessels and get oxygen quickly into the cells. This can either stop or shorten the length of a sickle cell crisis."

Possible Upcoming MP4CO Clinical Trials

Thursday, February 2, 2012

Supporting Sickle Cell Support Groups

I recently read a story on a facebook sickle cell group page about a young woman with sickle cell who went to the doctor with her younger sister. Her younger sister was newly diagnosed with sickle cell AND was having a pain ‘crisis’. The older sister was shocked at the doctor’s response when he referred them both to a hematologist and then said, “I didn’t know what to do with sickle cell.”

The shocking part about this story is that the young girl’s pain ‘crisis” was not addressed. This was shocking because of the basic requirement for medical professionals to "treat" sick people.

What does this say about sickle cell treatment today? There is still a lot of work to be done.

We still have to participate in educating the medical community, informing the public, and advocating for respect, good treatment and compassion. We (people with sickle cell) have to support each other.

Sickle Cell Support Groups are a united voice for people suffering with this disease. Together health care leaders, SCD patients, medical staff, friends and family do make a difference.

Together, they encourage us to live well and live long. They inform us and answer questions that relate to our experiences (bad or good) with health care providers. They plan events in the community to bring awareness and put a face on sickle cell. They work to encourage the political process related to sickle cell policy, research and funding. They also empower us to take charge of our health.

Sickle Cell Support Groups are everywhere.

Search the internet for “sickle cell support groups” for your city or state. Ask your hospital’s education or patient services department, look for clinics, medical groups or sickle cell advocacy groups that meet on a regular basis.

Get involved and have your say. Be apart of the bigger fight because there is power in numbers. Together, we will win this battle against sickle cell disease.

If you can't find a support group, go to on-line groups like People Living With Sickle Cell.

Or try Facebook. There are a lot of facebook group links where people with SCD share information and encourage each other. (My facebook page is just one example).

Let’s not tolerate bad medical care, medical disrespect, or ignorance to go unchecked. We can (together) address our needs one doctor at a time, one hospital at a time, one city at a time and one nation at a time.

Wednesday, January 18, 2012

A New Day Has Come For Children With Sickle Cell Disease

(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 the complications of sickle cell disease, and the important work being done at Children’s Hospital of Boston to find a cure. “Children’s physician-researchers have done what others have tried to do for decades; they’ve found a way to override the sickle cell defect,” he said. Mr. Loveman then introduced the team of doctors led by Dr. Stuart Orkin and Dr. David A. Williams, who are behind the breakthrough strategies to “flip the switch” on Fetal Hemoglobin F (HbF) and cure sickle cell disease once and for all. “Hope,” he said, “is in sight.”

Enter Celine Dion and Rene Angelil, AEG Live, Children’s Hospital Boston, Southern Wine & Spirits, Angel Management Group, Restaurant Guy Savoy, and countless other sponsors too numerous to name. Only heaven bestows such star power. The rest was history in the making.

As Celine walked onto the stage, a new day dawned for children with sickle cell disease. When she began to sing angels smiled, clouds parted and the rain of hope fell like a beautiful waterfall. With the voice of perfection, accented with flawless wardrobe changes, and make-up sprinkled with tears, Celine’s heart was fully exposed.

While I listened to Celine perform, like only Las Vegas could contain, I looked around the Colosseum in amazement. I was witnessing history. When Celine cried, I cried. God allowed me to live to see the dawning of this new day.
(photo of Celine and A.J. Green, young man with sickle cell)

As Celine sang, my heart sang,

“I see a light in the sky
Oh, it’s almost blinding me
I can’t believe I’ve been touched by an angel
With love

Let the rain come down and wash away my tears
Let it fill my soul
And drown my fears
Let it shatter the walls
For a new sun
A new day has come
A new day has come.”
(song by Aldo Nova & Stephen Moccio)

I may not see a cure for my sickle cell disease; I’m too old for these new procedures. I see, however, the light shining for children with sickle cell disease…………can you see it?

Thank you Melanie, Caesars Palace, Celine and Rene, Children’s Hospital of Boston, and the numerous sponsors of Play Without Pain: Children’s Sickle Cell Benefit. You are all partners in giving the gift of life. Put on your sun glasses, it’s gonna get bright.

(photos by Denise Truscello/WireImage)

Sunday, January 8, 2012

2012 - The Year of SCD Awareness

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 for Disease Control (CDC).

What the focus seems to be leading toward is psycho-social help and improved care/treatment for adults with SCD. That is a good thing.

Another good thing is the 2012 calendar filling up with events, support services, conferences, and meetings about Sickle Cell and related blood disorders.

Our Voice, the voice of people living with sickle cell disease, will continue to speak out bringing information and education globally. I'm excited about the future so stay tuned. I'll post events as they come my way.

One big event coming January 15, 2012 is Celine Dion at Caesars Palace. She will play a charity show to support Children's Hospital Boston "Play Without Pain Children's Sickle Cell Benefit."

This is a wonderful thing!!!!!

Click here for ticket information & concert link