Sickle Cell Awareness Month

Sickle Cell Awareness Month

Two weeks ago, I received a phone call from a woman who had stopped by my information table at a health fair.  I had sent her a packet of information on sickle cell anemia.  She thanked me and asked if I could send additional materials.  She was participating the Stomp Out Sickle Cell 5K Walk in Washington, DC.  She wanted materials to share with local people taking a bus to this event.

banner in city park: Save Our Sons, Save Our Sisters, Save Our Souls

SOS banner in Springfield, MA

Sickle Cell Anemia is a disease that I rarely hear about.  In my search for materials, I discovered newly released guidelines for the treatment of sickle cell disease.  The guidelines include recommendations for drug treatments, pneumonia vaccines and blood transfusions.  I printed out this news story, as well as materials on sickle cell diagnoses, pain management and tips for staying healthy.  I mailed these materials ASAP.  I’ll admit that I brought the packet to the post office myself, and paid the postage!  I am wary of placing anything in the workplace mail room if I want it to move quickly.  I know it takes a circuitous route before it reaches USPS.

Shortly after I received this phone call, I saw a Facebook post regarding the 8th Annual Sickle Cell Disease Awareness Dinner, sponsored by the Baystate Mason Square Neighborhood Health Center.  I cannot attend everything, but I like to know what’s happening.  I read the local papers.  I follow social media for several health activist groups.  I subscribe to several listservs and blogs.  I network with people inside of Baystate Health, in hopes that they will give me a head’s up if a health event is in the works.  At times, I am overwhelmed by the amount of information flowing toward me.  I am notified about some events 4-5 times, and I totally miss out on other events.

I will admit that sometimes I just start hitting the delete button because I cannot digest any more information.

In September 2014, my awareness of sickle cell disease is growing.  I remind myself that awareness is just the first step.  The truest way to help someone is to make a connection.  That connection cannot be contrived.  Through some miracle, we connect with someone else.

This summer, I had a table at a crazy-busy health fair.  I gave my pitch, offering to research any health question, to hundreds of people that day.  One woman had a need.  Her son had suffered from sickle cell anemia.  She wanted to know more about his disease.  A few weeks later, she requested additional materials so that she could help others.  And, she will help people that I will never meet.

The Stomp Out Sickle Cell 5K Walk was attended by passionate health advocates, but (according to this blogger) was not covered by mainstream media.   I believe her.  I could not find any news stories reporting this event.  I had better luck on Twitter.  As with many issues, Twitter gives voice to those who do not catch the attention of mainstream media.  Check out  #SickleCellAwarenessMonth.