Sickle Cell Disease - 100 Years Later

2010 marks the centennial since the first formal report of sickle cell was documented in the United States. Dr. James Herrick was the doctor that documented that case in 1910 although hospital intern, Dr Earnest Irons, discovered it. There have been a lot of advances in regards to understanding the disease and how it affects those with the blood disorder, but awareness is lagging behind.

This may have more to do with those affected by the disease than any other one factor. I have found that there has been a shroud of silence within the sickle cell community and although there has been a concerted effort to break this silence, people are still very reluctant to expose their struggle with this disease. Personally I understand the silence because sickle cell is a disease that wages its war against the one who has it as well as the entire family unit. For many years I wanted nothing but to die. I never expressed it to anyone, mainly because I couldn’t admit it to myself. My mother was my one and only advocate and I never had to worry about anyone being insensitive to my needs because she had it covered. It was her dedication that allowed me to focus on getting better without having to fight my way through the systems that be and when she passed I found myself battling sickle cell alone. It was such a heated battle that I was unable to find a reason to live. I wasn’t going to kill myself, but I was determined to stop fighting. One day I woke up and realized that if I was going to fight back and experience a reasonable quality of life I needed a new support system.

It wasn’t long before I met a man that I consider to be my personal guardian angel, Mr. Dan Moore, Sr. He is a veteran filmmaker, author and historian. He is the founder of APEX Museum, an African American history museum in Atlanta, GA and the founder of Marrow For Life, an organization that educates people of the need for more African Americans on the National Bone Marrow Registry.

Mr. Moore is responsible for motivating me to start SCD Soldier Network, Inc. a registry of volunteers dedicated to supporting those with sickle cell disease. He has also been very instrumental in helping me to break my own silence. I walked into his office one day to chat about the progress that I was making in recruiting new volunteers and I was approached with the offer to co-author a book with him. I didn’t know what to do with that offer but accept it. I asked what my contribution would be and he responded by telling me to just tell my story. I finally had a platform in which to garner support for myself and every other person affected by sickle cell. It was perfect timing and he made it possible for us to release the book on June 19, 2010 in observance of World Sickle Cell Day.

There are many approaches to support, but the SCD Soldier Network’s commitment to its front-line soldiers (those who have SCD) is to do whatever it takes to keep them from falling through the cracks. Oftentimes people just need a point in the right direction while others need to be taken by the hand. When you are doing all that you can to survive this disease you need people in your corner, who will cheer you on, address issues that you are unable to and be there if you ever find yourself in need of help. Our volunteers will get the training needed to understand our approach and have the tools available to implement that kind of support.

September is Sickle Cell Awareness Month and I will be promoting the book that I co-authored titled Sickle Cell Disease 100 Years Later. It chronicles my battle with sickle cell and how it led me to the formation of SCD Soldier Network, Inc. It also includes the stories of others who battle the disease and gives information about the history of the blood disorder.

2010 is the year that many of us will be able to proclaim as the year that sickle cell gets its voice. Many people are standing up and speaking out in order to bring greater awareness to the disease. SCD Soldier Network, Inc. is developing a comprehensive advocacy program that will prepare its volunteers to speak with a unified message. We are hoping to host our first boot camp styled training in 2011. This will be an event where those in our database will be processed and cleared to advocate in their hometowns.

I am looking forward to closing out this year by beginning the work of a new kind of awareness. Statistics are just not enough. Until those numbers get a face and voice they won’t mean anything to anybody. Do your part to spread the awareness by becoming a volunteer at SCD Soldier Network, Inc.

With a donation of $15 or more you can request your choice of an autographed copy of the book Sickle Cell Disease 100 Years Later or A Commemorative World Sickle Cell Day T-Shirt. You may also order the book online at www.amazon.com or our e-store at createspace.

Your support is greatly appreciated and be sure to stay tuned to my monthly animated series on youtube “Will Sickle Cell Get its Grown-Up Voice”.

What's In A Name - The Sickle Cell Delimma

According to Merriam-Webster the definition of the word “name” is 1: a word or phrase that constitutes the distinctive designation of a person or thing 2: a word or symbol used in logic to designate an entity.

With the understanding of what the word “name” means is brings me to my first question. Why are some within the Sickle Cell Community, so offended by the name “Sickler”?

If I were to play devils advocate and attempt to answer my own question, I would say that it’s because a “name” is more of a spiritual implication that speaks of one’s purpose and destiny. I personally do not have a problem with being called a sickler if it is being done to quickly identify me as a patient in need of specialized care. If that is what activates medical attention and identifies me as one to be seen expeditiously, then Sickler I am.

I think that the problem with the term is that it has been used as a stereotype that specks to the inaccuracy of the condition and those who suffer with the blood disorder. Does that change with the changing of a name? God was notorious for changing people’s name and it was a direct result of their new relationship and standing with Him. By changing their names it was a way for others to know there had been a change in them. A name oftentimes is accompanied by a reputation and perhaps the reputation is such that it over shadows the name itself.

Lets explore the name changes that the sickle cell population has undergone. Does anyone really know how we even got the name sickler? I would guess it doesn’t really matter, because the reputation of the name is so tainted that many refuse to accept it and are out right offended by it.

Back in the late 90’s when I first began to engage the sickle cell community and accept the call as an advocate for sickle cell disease, one of the first things that I noticed was that people wanted to be called “Defiers” it spoke of their ability to defy the illness that was killing them. I didn’t see a big change within the medical community and no matter what we had decided to call ourselves we were still being referred to as sicklers.

Then there was this term of strength and in walks the “Warrior” this was much more befitting, because it spoke to our battle with the disease and was an indicator that we were well versed in the subject of warfare and had an immense understanding of the disorder that we were in war with. Some of the medical community began to take notice and change in small ways, because I think for the first time they realized the amount of strength and agility it took to manage the disease successfully.

The problem occurs when those of us who are not so informed decide that we will carry the title because it puts us in a place of authority and takes us from victim to victor. Now we have a mixture of individuals who are now holding on to a new hope that somehow this name change will wipe out the reputation of the community.

Is there ever going to be a name that takes away the lack of awareness, ignorance and shame? I can’t be certain, but that is why I come to offer you yet another title. When I started the SCD Soldier Network, I wanted to provide a place that supported the real warriors (the one’s that were truly on the front lines and were working towards systematic changes) while also training those who battle the disease in less than a heroic fashion.

I wanted to begin to chop away at the reputation and provide a network of individuals who would help bring greater awareness to the battle and change the perceptions of those living with this condition. If I were going to try and change people’s perception then I was also going to have to change people’s actions that solidified the stereotypes. There is only one real difference between a warrior and a soldier. It is that a warrior is oftentimes in battle alone, whereas a soldier has enlisted with other warriors and less skilled fighters to battle.

A warrior who has enlisted to fight with others does not lose their rank nor their ability to shine, they have just positioned themselves to train others and to place themselves in a unit of covering, much like a Christian becoming a member of a church.

Soldiers have many rankings and not all are expected to have the same level of experience, but they are connected to a team who will stand along side them to accomplish the mission at hand.

Have we found a suitable name yet? Personally I don’t think so, but what I want to do is to change the attitudes and understanding of those who insist on still calling me a “Sickler”.

Enlist today and move up the ranks, until you can truly stand up in the authority of the name that God has given you. SCD Soldier Network is working toward providing the training that will impact the medical community in such a way that no matter what they call us, they know who we are. Your thoughts on this subject are greatly sought let me know what you think.

Sickle Cell Speaks, How Will You Respond?

I’m shaped like a smile,
and I’ll be around for a while.
I get stuck in blood vessels blocking the flow,
keeping oxygen from organs and they don’t even know
until they start feeling pain. It’s like being in the rain not expecting to get wet.
They know the pain is coming it's just a matter of when,
and its like it’s a shock to them time and time again.
There is no way to take the abuse that I bestow,
making blood counts drop low,
causing major complications
and creating indications that life is not worth living.
With each crisis I leave patients in confusion,
about the delusion that they are like everybody else.
The pain crisis duration and the miseducation adds to the frustration.
Their narcotic concoction does all it can but the pain just won’t go away.
The patient is in suspense when the nurse refuses to dispense,
What the doctor has ordered in the charts.
By manipulating the system she gets it her way
And patient is stuck with her for the day.
She walks into the room without any grace,
She says rate your pain with that look on her face.
So they try to pretend,
That it’s not at a 10,
So she won’t think what she already does.
The drugs that they use to try to diffuse the pain is only a temporary fix.
It can never replace the soothing touch of a hand,
or a visitor who is there trying to understand.
The battle is heated and they fight for their life,
but I’m their opponent and I cut like knife.
Many have fallen by the swing of my sword,
Despite all their cries to their Lord.
A few of them are trying to shed some light
But without your help, it won’t shine very bright.

By: Phyllis Zachery-Thomas

When You Hear The Word Angel

When you say angels most people think of pretty little fat babies with wings, when in fact they are big strong warriors. That is the premise behind the SCD Soldier Network. For far too long when people hear about the disease Sickle Cell, they think of children, when in fact we are also adults who have battled all of our lives with a disease that has no cure. I think Soldier would be a proper identifying symbol for the blood disorder. Not taking away the importance of our poster child, but its time to add a new reference to this hereditary disorder that affects 1 in 5000 people in the United States alone. According to the NIH 1 in 500 black births have Sickle Cell Disease. For those of you who are not aware of my campaign, let me introduce myself and what I am attempting to do. My name is Phyllis Zachery-Thomas and I have Sickle Cell Disease (SS). After finding out that 100 years ago the first case of the blood disorder in the United States was documented in western literature, I began to think about how far we have come since then. One of the first things that I realized is that better treatments have increased the life expectancy in those who battle the disease. The average life expectancy is 45 years and that is my age. It shook my core to think that after 100 years sickle cell is perceived to be a childhood disease. As a whole, people were not living long enough to see adulthood and that probably accounts for part of it. I believe that we are the first generation of adults to live with the disorder, but it has certainly been a battle. As a result, the organizations that were created for the education, advocacy and outreach of the disease, primarily had programs targeted towards children. 2010 is the year that Sickle Cell Disease will get it's grown-up voice. When I began in my efforts to unite adults with SCD through the formation of the SCD Soldier Network, I never knew how many amazing people I would meet. Adults with SCD are now beginning to stand up and speak out concerning their needs. That's why I was motivated to rally theses individuals together for the purpose of having a united voice. Many groups have been developed with that same mission in mind, but there was something more that I wanted to do. I wanted people to know that Sickle Cell was a daily battle and when they thought about people with the disorder, they thought about strong individuals fighting for their lives. Much like my angel theory, people approach things according to the imagery that they have. You tend to count on angels when you know that they are not babies, they are warriors fighting on your behalf. With the Soldier Network, I want to send the message out that we are not poor little babies enduring a disease that has no cure. We are Soldiers and some of us have battle scars, because we are on the front-lines. We need your support not your sympathy. Now get up and become a soldier if you support this campaign. No, you do not have to have the disease as long as you advocate for better programs and health initiatives for adults battling this disease. Stand on the front lines and become a Front-Line Soldier if you want to get your hands dirty, or become a Support Soldier if you want to help recruit and promote this movement. The level of your involvement is up to you. If you want to contribute with a financial gift you can donate through our Peers Campaign. In order to sign-up go to the Recruiting Station page of our website and fill out the information card. Someone will contact you with a schedule for the informational teleconference designed to help you decide how you fit. I wrote an anthem that is being recorded by my niece Mecca Dawn. A Ruff cut of the video is below, however we will be going to the studio in order to finalize the song in preparation of our Promotional CD. Thanks for taking the time to read this blog and I look forward to meeting you on the battleground. If the video is unavailable at any time you can also view it on YouTube.

Making Them Understand

I just wanted to follow-up on my last post. Well, Dominique Friend of the Sickle Family Coalition and I went to the Sickle Cell Infusion Center in Columbia, SC. We did get an opportunity to speak with some staff members and administrators there, about some of their policies. After receiving a call from one of their patients it became necessary to make an in-person visit. If the center's director would have just taken the time to address the issue over the telephone, we could have avoided the visit. Since a visit was necessary, we wanted to make sure that we impacted the rules that they implemented at the center. There are some policies that seemed counter-productive to us and we left feeling as though they really listened to what we had to say. They asked for us to give them until after the holiday's to allow them to evalute their current program and take our suggestions into consideration. We felt that it was a fair request and if things are still the same and patients are feeling as though they are not receiving the treatment that the center claims to provide, we will be back. It's not always easy for you to get people to understand what you need or what you are trying to say when you are in pain, so that's when an advocate makes the most difference in during an incident. The patient was very emotional about the situation, because it didn't seem as though anyone was hearing her. After trying to reach the director without success, we became concerned. As an advocate, you have to keep a level head no matter how upset you are about the situation and believe me it takes tact and restraint. It's a must if you expect to make an impact. Overall the meeting was a success and after the meeting with the staff at the center we used the trip as an opportunity to recruit members for the Sickle National Coalition and possible SCD Soldiers. I am sharing a few of the pictures from our visit to Columbia, SC in a little video featuring a snippet from the Soldier Anthem.

Advocacy - The Real Work

I currently live in GA and I will be going to Columbia, SC tomorrow to meet with another Sickle Cell Advocate, by the name of Dominique Friend who resides in PA. She is an Author and has visited the White House to discuss policies for the treatment of sickle cell disease. Mrs. Friend is a part of a ground roots effort to create a National Family Coalition and we have joined forces since I am creating the SCD Soldier Network and our goals are the same. She is what I call one of my "Front Line Soldiers". She is in the trenches doing the real advocacy work. I was honored to be asked to assist her in mediating a situation.

Mrs. Friend received a frantic call from a sickle cell patient who was upset that the Palmetto Richland Sickle Cell Infusion Center in SC had changed their policies that limited her ability to get treatment. Typical infusion centers have a standard of care that allows patients with sickle cell disease to come into the center and receive care as needed in order to prevent them from going into the hospital as a result of a pain crisis. Often times if you are able to get treatment at the onset of a crisis you have a good chance of preventing a long hospital stay. The center just recently changed it's policy and now requires patients to call in for appointments although they are in a minor emergency situation. They are also limiting the availability of services to one day per week. There are other changes that were of concern as well, but those are the two that have to be changed if they are to serve the community in which they were created to serve.

The patient that called Mrs. Friend is currently in the hospital as a result of the added stress caused by this issue. When the center was contacted there was no cooperation by the director to speak with us. Later we found out that the staff informed the patients that if they spoke out against the center, they would run the risk of it being closed and no longer available to them. That type of threat caused us great concern, so we have tried to contact the media, the local sickle cell foundation as well as the Mayor and Councilman of that district.

I sent an email to Councilman Cromartie stating that there was an issue with a facility within his district and I was very clear in letting him know that the purpose of the email was to provide him with knowledge that there was a problem and that we would be arriving to try and mediate it. I also sent a copy of that email to the local sickle cell foundation and to Mayor Bob Coble. I was saddened by the response that I received via email from the Special Assistant to the Mayor, Julie Ruff. She stated that she was not quite sure what I was looking for from the Mayor's office or the councilman because they did not have jurisdiction over how the center operates and they could not interfere. I replied to her response and informed her that I did it as a courtesy so that the mayor wouldn't hear about first from the news. I thought it was settled until my second reply came back from Ms. Ruff and she wrote "As I stated, we have no jurisdiction over the hospital and it's affiliate".

The tone of that last message rang out with a clear notice that the Mayor's office could care less about what was happening at the sickle cell infusion center. Add the threats made by the center's staff and we have a problem that may be a little bigger than we anticipated. We are rallying up our small army and heading to Columbia SC, and it reminds me of how important real advocacy work is. Yes, I have sickle cell and I take it personally, but why provide services if you don't understand the importance of what you are providing. I hope that with a little wisdom, a lot of faith and prayer, we will be able to help the patient in SC receive proper access to a facility that was designed to help them manage a disease that they fight 365 days of a year. That's why I need my soldiers with me. What else has to happen before you agree that it is really time for sickle cell to get it's grown-up voice.

Time To Give Sickle Cell A Grown-Up Voice

In 2010 we will be celebrating the 100th anniversary of the discovery of sickle cell anemia. Most people are not aware of what this blood disorder is or how it affects the individuals who have it. That amazes me because so many people are affected by this disease and it affects the African American population in a huge way. 1 in 500 African American babies are born with sickle cell disease each year in the United States alone. The national and local Sickle Cell Associations do a great job addressing the needs of children with the disease, but adults have issues that have not been addressed in a way that brings enough support. Since earlier statistics didn't have much hope of anyone living long enough to reach adulthood, it left the first generation of adult survivors fighting primarily on their own. We love our poster child but after 100 years it is time for sickle cell disease to get a grown-up voice. It is my mission to create a nationwide advocacy group for adults with sickle cell disease through the formation of the SCD Soldier Network. This group would be responsible for providing support services for adults with sickle cell as well as financial assistance for those who are head of households that are experiencing financial hardship due to being hospitalized from the affects of the disease. The financial aspect of the group would be a small part of the services that will be available. Many of the programs that will be put in place will come straight from the suggestions of those in the sickle cell community. I have the disease myself and I know that many times I needed help that was just not available. This network would try to address as many of those issues as possible. While I take my journey to developing the SCD Soldier Network, I will be posting a video blog that is being hosted on Dallas Austin's website at http://www.8dazeaweakend.com I will be posting weekly until September 2010. In the video blog I will give updates to my progress. I will post it every Monday and it will be called "Will Sickle Cell Get It's Grown-Up Voice". If you have trouble finding it among all of the other post, just do a search for sickle cell and all of my video blogs will be listed. I am already approaching the end of week three and so far things are going great. I wrote an anthem that is intended to ignite the movement. It is being recorded and I have provided a sneak peak of it in my video blog(week two)as well as posting it at the end of this blog. There are so many things that are happening and I have a mountain of things to do, but I wanted to take out a little time to tell you about it. Don't forget to take a look at my video blog and leave me a comment, because I need to hear what you think about my mission. Until next time be safe and enjoy the holiday season. By the way look at my video blog(week one) and find out a little something about sickle cell.