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Free Health Clinic for people without Medical Insurance

Organized by Sri Sai Center of Charlotte, at;

Trinity United Methodist Church

6230 Beatties Ford Road

Charlotte, NC

Across from Hornet’s Nest Park

Saturday, March 26th, 2011

From 8:00 to 4:00 PM

Medical / Dental / Eye Doctors will be seeing visitors

If additional care is needed there will be resource personnel to help you.

NO APPOINTMENT NEEDED

Service to Man is Service to God

Free Food and Backpacks

All of you know someone who has lost their job and therefore have lost insurance, so please forward this to anyone who would benefit and let’s help be the Hands of God.

After several months of blogging and tweeting to inform the public about sickle cell and sharing the patient perspective of the physiologically and emotionally issues of living with sickle cell, it is great to see that this New Times article shares other patient voices that have confirmed information communicated in my tweets and blogs. There are thousands of other voices out there that can also validate some of the issues shared in these stories. I am proud of these particular patients who have been transparent in sharing the challenges they face and also acknowledging that they have it, which is very difficult for some to do publicly.

To learn more about their stories, go to:

http://www.nytimes.com/interactive/2011/03/02/health/healthguide/te_sicklecell.html?ref=health

For the final blog for the class requirement, I wanted to revert to the thought of authenticity. To be regarded as a reputable source of information, the community has to see you as honest, trustworthy and relevant. When I first started this blog, I spoke in third person not representing myself as a patient, because I wanted to maintain the third person stance, but it became increasingly hard to speak in third person when there were so many issues I connected with on a personal level.

During this class experience I read many posts made by others and admired those who posted their photos and accepted that this is me, this is what I have, this is what I do and this is what I want to do.  To me, that is the ultimate example of authenticity, a true unveiling of self. But have I personally truly arrived there? And why do I question this simply because I didn’t make the decision to post my photo? Is it just as authentic that I spoke what was true to me or to the best of my knowledge? I’m not sure that there is an answer to that question nor that it should be but it could simply be that we have the right as individuals to go as far as we want with social media or not at all.

Throughout this experience, I observed what others were saying but quickly realized that I had to contribute to the conversations to stay relevant. Author Brian Solis says that “this new media is not a game played from the sidelines…” (2011, p.5).  That I have witnessed firsthand–the results of moving from the sidelines and entering the game. Now that I know how the game works, I can now decide what role I want to play.

Piggybacking on my last blog, I wanted to finish the conversation about engagement. Not only did I realize the power of social media making us instant publishers, I also recognized that I came to this realization much quicker by posing a question to patients that I knew held deep convictions to. Perhaps for the first time, I engaged with a larger segment of the overall social community that I’d initially set out to engage with–sickle cell patients.

I do not have the following that the Sickle Cell Warriors Blog may have at this point but by being cited in its larger forum, placed me (The Sickle Circle), in the very community I set out to engage with. “As in any social network, you must embrace and participate in the community if you wish to truly be part of it” (Solis, 2011, p. 97).  Again asking an evoking question versus simply dispersing information caused the two-way form of communication to ignite. This is magical for someone who was still gripping the fence before submitting to the requirements of the social media experience.That was due in part to privacy concerns and my inexperience.

There are so many still on the fence too, reading information made available by others–test driving, but not interested in taking the wheel yet, themselves. I understand their position but I am even more convinced that we will experience a great change in awareness for sickle cell through the use of social media and because of it, it will not take another one hundred years to witness the results.

As I mentioned before, I started this blog for a class requirement and as much as I thought I’d simply test the “social media waters” and bow out gracefully after I’d completed the class–because I wasn’t very experienced, I have met some very wonderful people and it has been gratifying to receive feedback from others to “not give up on sickle cell.” Because of that, I believe I will continue on with the social media journey. Let me explain how this all started.

The class I enrolled in is called Communications in the Digital Age. A major requirement of the course was to create an engaging social experience. I couldn’t think of a more needed topic than sickle cell and felt that if I had to devote an enormous amount of time on any subject, I must occupy myself in this experience regarding the issues of this “forgotten illness,” as I recently saw it referred as.

Today, when I read my first true citation as an author by the Sickle Cell Warriors Blog, that’s when one of the first lessons in this course resonated with me. I recalled a passage in the book Engage! in the first chapter that read, “Social media is the democratization of information, transforming people from content readers into publishers” (Solis, 2010, p. 37). Before social media, we were recipients of information basically reading what was delivered to us, but we didn’t play a major part in reciprocating our thoughts. Notwithstanding, we are now able to respond quickly, as the Sickle Cell Warriors Blogger did.

As I complete the final two blogs for this requirement, I will share some other social media insights that are relevant to my experiences creating The Sickle Circle.

I saw a blog entry title about sickle cell patients appearing anti-social, and without  having access to the entry and reading it, I thought it was a great topic to discuss. A lot of times many sickle cell patients may seem anti-social or bad-tempered, but in many cases they are reserving energy and avoiding unnecessary stress. People should keep in mind that although they may not complain, many patients experience daily pain but have learned to cope. Although in the process of coping they are still hurting and when hurting  some blurt out their anguish and some others may remain quiet–thus, perhaps appearing anti-social. Because of this fact people may not understand how to relate to people with sickle cell. One of the last things that a sickle cell patient would want is for people to alienate them because the act of alienation would produce stress. While someone  might regard them anti-social, the person with sickle cell is juggling several things: pain, the stress of having the pain in a social setting and not necessarily wanting strangers to know. In addition, they would not necessary want to introduce themselves, and say, “I’m experiencing some pain because of my sickle cell,” and the person answer back, “oh, what is that?” This is one of the dreaded questions most sickle cell patients do not care to hear, especially considering the fact that the illness was discovered in America one hundred years ago, but other illnesses still gain more national exposure.

It is very important for those with sickle cell and thalassemia who have had ten transfusions or more to be tested for iron overload. Although iron is important for the body, too much of it in the system can cause organ damage caused by the body’s inability to dispose of the excessive amounts. “As iron builds up in the body, it can lead to serious health problems, such as a weakened immune system, diabetes, and heart failure”(http://askaboutiron.com/patient/impact_of_iron_overload.jsp).

The Be Sickle Smart Program was designed by the pharmaceutical company Novartis, to educate patients of this health concern, and provide testing. According to its website there are three ways to know if you have excessive amounts of iron in your body: a serum ferrin test (blood test to check the amount of the protein ferrin in blood cells), liver biopsy or magnetic resonance imaging.

To learn more about the Be Sickle Smart Program, visit their website below. They even offer text reminders for events coming to your area: http://askaboutiron.com/patient/be_sickle_smart.jsp?usertrack.filter_applied=true&NovaId=2935376878973470734

 

Sickle Cell Advocacy Day

Sickle Cell Advocacy Day is approaching. It’s an opportunity for the sickle cell community to join together as one big “voice” on Capital Hill. This year’s advocacy day is scheduled for March 24, 2011, with advocacy training scheduled the day before, according to SCDAA. For additional questions and to RSVP contact the  Sickle Cell Disease Association of America at 800-421-8453 or at scdaa@sicklecelldisease.org.

No once carries a louder voice than those with sickle cell to help rise awareness and their families. So, the time is now for all to take part in their own unique way to share stories, to write lawmakers–to let your voice be heard. The SCDAA President Sonia Banks said that the voice of the patient is even louder than hers. She endorsed patients getting involved in awareness.

I  understand why some patients choose to live in secrecy. First, not many have heard of the illness (even after 100 years since the discovery in the United States, that seems unimaginable). So because people can be ignorant towards the unknown, patients choose to avoid explaining their illness and  therefore deal in private. But if patients continue to remain silent, not a lot will be done. We can’t allow 100 more years go by and not have made the necessary inroads to increased awareness and funding.

I appreciate a tweet today to Oprah by a sickle cell advocate, asking if she’d considered doing a show about sickle cell. That’s what its going to take–for us to think outside the box and keep asking. Someone will say yes one day. We can’t give up. We are the hope for the younger patients coming up after us. What will we leave them?

A special thank you to all the sickle cell lobbyists, advocates, healthcare workers, patients, families, friends, colleagues, etc. Because of what others have done, improvements have been made in the care of sickle cell clients.

If you are a part of a support group or have been thinking about starting one hopefully this blog will be informative in helping to cultivate a successful one.

First, I believe there is a difference between a group and a team. I believe that we can be a part of any group and have group members but not everyone can be a part of any team because we are not necessarily interested in compromising with others when there is no feeling of cohesion.

Issues can evolve because of systems, substance, patterns and dysfunctional conflicts. According to the book, Small Group and Team Communication, “Perpetually avoiding, engaging in too much competition, compromising too quickly, or accommodating to avoid controversy by smoothing over difficulties can all develop into dysfunctional group conflict patterns” (Harris & Sherblom, 2011, p. 207).

I’m sure we have found ourselves in one of these areas of guilt at some point in our lives. We used to simply blame issues on personality or age, but conflict is caused by other elements than just those, as you can see. Nevertheless, conflict can actually be a good thing. Harris and Sherblom (2011) note, “…the Chinese character for conflict consists of two superimposed symbols graphically showing conflict’s two sides: opportunity as well as danger (Hocker & Wilmot, 1991) ( p. 202).”

Having conflict that allows for energy to produce creativity, exposing ideas and improving processes are some examples of constructive conflict–what we’d like to aim for. Through constructive conflict we are able to hear the other perspective,  allowing for true understanding and compromise. We in turn are empowered to fulfill our part of the total contribution in an authentic way–avoiding destructive conflict that has the total opposite effect.

Hopefully, for a sickle cell support group everyone will be bonded by personal experience or the heartfelt regard of the need for more awareness and funding. If for any reason you are experiencing destructive conflict, I urge you to get a third party involved to assist in conflict resolution, particularly, if he or she is skilled in resolving conflict because there should be no need to allow issues to fester. After all, lives are at stake.

Finally, Harris and Sherblom (2011) also state that, “Underlying successful conflict management, regardless of the particular strategy used, is the honoring of interpersonal relationships and mutual respect, as well as the responsible use of power. Both these prerequisites take intention and focus, along with an awareness of the cost of disregarding them” (p. 219).

Therefore, we should all play a part in maintaining successful group dynamics. When we can work through the differences, constantly stay focused on the goals by implementing the tasks at hand, we enter into the realm of successful team dynamics.