NFL 49ers Draft Cam Johnson Who Has Sickle Cell Trait

I received this link from the advocacy group, "SickleStrong". Thank you for this article.

Cam Johnson wants to be treated like any other draft ready college football player. Certainly his hard work indicates he deserves being rewarded fairly. Yet, this is not the case. Why? You see the NFL General Managers have done their risk assessment and can make the case to draft players like Cam at a lesser value using the SC Trait as the reason to draft him in a lower round and pay the lesser rate. Economics aside those of us in the Sickle Cell Community should applaud this young man for his commitment, hard work and pursuit of a life long dream. May God continue to Bless him and let us lift him up in prayer.

The link below is the San Francisco 49'ers press release regarding the 2012 Draft. Read some of the comments regarding opinions about Sickle Cell Disease and traits. There are many differing opinions from a lot of ignorant people. We need to educate and advocate as often as we can in order to clarify and remove barriers associated with SCD.


http://www.ninersnation.com/2012/4/29/2986396/49ers-draft-picks-cam-johnson-sickle-cell-trait

SCD-- Where They Are Headed and What They Are Leaving Behind ( A Series Of Discussions)

My sister in law, who happens to be President & CEO of The Sickle Cell Disease Foundation of California was in town attending "The Second National Conference on Blood Disorders in Public Health".  After talking to her my question was, where was SCD research headed and why was there no studies showing advances in Stem Cell or Bone Marrow transplantation.  Her reply was SCD is going Global.  That's where the action is; "New Born Screening".  Consequently, in this posting I will talk about an abstract presented during this session and what it means to adults with SCD.

ABSTRACT #1 (BS8-5)

Clinical Predictors Of All-Cause In-Hospital Mortality In Patients With Sickle Cell Disease in United States-First Reported Results From A Nationally Representative Sample.

RESULTS

In 2007, a multi site study of 166,084 admissions with a diagnosis of SCD was conducted. Males represented 37.5% of SCD related hospitalizations. There was a total of 844 deaths reported in the above admissions with an all-cause in-hospital mortality rate of 0.5%. Of these, 420 (49.7%) were females. These are astounding odds that SCD patients face when they are admitted to the hospital either through pain crisis, acute chest syndrome, and or development of sepsis. Intubation, as a cause of death occurs primarily after the patients organs began to crash in ICU.  In conclusion, the authors propose that early and targeted aggressive therapy based on the presence of these factors should guide the management of hospitalized SCD patients for improved mortality.

MY COMMENTS

As I write this, it makes me wonder why so much money, time and effort is put into research that we already know the answers to.  Fifty years of studying SCD has yet produced viable outcomes or protocols for hospitals to use in assessing patients with SCD.  It pains me as one who's had all of the above diagnosis; death still affects about 50% of those patients admitted with these diagnosis. By the grace of God and the relationships I have with my doctors allows me to post this blog today. 

One of the factors I did not see them discuss is how much of a contributing factor the amount of  pain meds a patient has taken prior to their ER admission. I pose this question because in 2005 I had an episode where after days of self medicating I wound up on a ventilator with Acute Chest Syndrome for almost 10 days.  Many SCD patients do not have the support group I had who could inform the ER doc of what types of pain meds I was taking, how long and the dosing.  This is important information that can go unnoticed and cause mortality.  My sister in law believes the lack of advocacy in the ER by a parent, family or friend to fully disclose pain medication usage causes an alarming amount of unwarranted deaths to those with SCD.   

In conclusion, we must communicate with our physicians (Hem/Oncs) the need for adequate and timely protocols for patients presenting with pain crisis as an underlying symptom of high mortality. What do you think?

Help Support Sickle Cell Camp For Children

I recently wrote about adding more content to this blog. Camp Crescent Moon is the oldest Sickle Cell Camp in the US. What's so unique is it has survived all of these years because of corporate contributions and individual donors who understand the hardship SCD presents to our youth.

My eyes were opened to barriers faced by our youth when I worked in Philadelphia, PA in the Pharmaceutial industry and visited the clinic and hematology floor at Chilren Hospital. What I noticed were children who wanted to enjoy camp with children who are like them. So, below is a link which will allow you to give support to "Camp Crescent Moon".

http://www.firstgiving.com/fundraiser/patriceragin/campwalk

Powerful Spoken Words About Pain...Sickle Cell Anemia

Russell Simmons "Young Voices" once again highlights Jasmine Baily's powerful spoken word on coping with pain affecting those with Sickle Cell Disease. Enough said!

http://www.youtube.com/watch?v=1OKkzFlWvbA

No One Should Be Alone

On Facebook a colleague ("Mindful Heart for Sickle Cell"), posed a question relating to being hospitalized alone and with no family or friends by your side.  It sheds light on many facets of our life such as; despair, self worth, and contiuous unhappines.  If we are fortunate we have family members and or friends who are concerned and understand our disease, willing to be by our side to comfort and encourage us. Some of us are so unappreciative that we run those who care about us away. We must be mindful that others give to us from their heart.

When I was a youth I knew that my family was there for me.  Although I didn't know I had SCA.  My parents would always say I was anemic but not that I had SCD.  When I would hurt they and my brothers would rub my aches and help me get my mind off the crisis by singing to me or helping me imagine my victories over the pain.  I say this because other than college and my first job, I can't remember when I was alone and checked myself into a hospital.  After getting married in 1981, I have never been alone.  My wife has always been by my side. Between her and my father they have slept in the same room with me on every admission.  That's love and devotion.  And I thank God for it.

Back to my comment regarding "being alone".  I wrote on the Mindful Heart webpage, "My family talks about this all the time when I am hospitalized by a Crises.  My wife is a big proponent of  looking out for care givers and realizing who has little or know support.  When I feel better, I try and talk with patients who are willing.  I am careful to assume a patient has SCD and sometimes that's a problem because a lot of us are not willing to talk about our disease in the public domain." Therefore, I do feel there are a lot of us out there who can have a much richer and more meaningful life if we seek each other out. 

One more comment.  If there is no one with the patient how do they know they are getting proper treatment?  This is not to say that those of us who have SCD don't get proper treatment in hospitals yet we've all had opportunites to question our care. Typically the patient is concerned with pain management and not necessarily with other treatments and testing.  My family motto has been, "caregivers watch the caregivers" because who cares more about you?  This is why I strongly suggest the we visit each other, talk to each other and pray for each other. No one should be alone.