The Many Faces of Sickle Cell Disease

On June 10, 2014

During a short, yet sweet, heart to heart with one of my Spelman sisters today, we discussed how many worthy causes exist and need the help of regular people like you and me in order to survive and assist the very people affected by the disease/illness they support.  Throughout my social networks, I saw at least half a dozen requests yesterday alone to fund research for different diseases, including my own reminder about Cocktails for a Cause tickets.  It really started to remind me of the advice I once gave to brides about choosing wedding invitations that will stand out of from the sea of invites people receive almost weekly from May – October.

Being a wedding guest is expensive.  Your average wedding guest cannot afford to attend every celebration to which he/she is invited.  In addition to your relationship, how special and unique the invitation looks carries a lot of weight in invited guests deciding whether or not they’ll be present on your wedding day.  The same can be said about people who are asked to donate to countless charitable organizations and/or buy tickets for fundraising events.

Since there is no fancy invitation to send out for National Sickle Cell Awareness Month, the only thing I can do is explain why I feel so passionately about Sickle Cell.

I think that my personal network, especially, has become so used to seeing me this way…

Jonette Jordan J Squared Events…that they’ve forgotten I often look this way

Jonette Jordan J Squared Events Sickle Cell WarriorBehind my smile, the following is occurring within my body when I’m in sickle cell crisis:

  • My sickle-shaped cells have stuck to the walls and can’t squeeze through my capillaries.  This slows or stops blood flow through these tiny blood vessels, which deprives tissues and my vital organs of oxygen.
  • This slow or stopped blood flow in certain parts of my body (usually legs and arms, but varies) causes severe pain for me.
  • This gradual destruction of my organs and tissues throughout my body will eventually kill me

What nobody knows about me (until now) is that I am sicker about 50% more of the time than I actually post hospital selfies.  I simply don’t like people worrying all the time and treating me like a sick person.

Other complications that I experience as a result of being born with sickle cell are:

  • anemia
  • constant leg and feet swelling (that will likely lead to leg sores and ulcers)
  • bone and joint problems
  • eye damage in the retina (which can lead to loss of eye sight)

Other sickle cell warriors experience the following as a result of the disease:

  • infections
  • stroke
  • kidney problems
  • liver problems
  • spleen damage
  • pulmonary hypertension
  • gallbladder disease

I am not talking extreme cases; this is the norm for sickle cell patients more often than not!

Did you know that before 1973, the average life expectancy for people with Sickle Cell Disease was 14 years old?  As in 8th grade!  Let that sink in for a minute…

Before I was blessed to live to see adulthood, I was a child often hospitalized and fighting for my life, much like these tiny sickle cell warriors who are currently trying to stay alive:


Due to people just like you donating to organizations such as the Sickle Cell Disease Foundation of California, advances have been made to extend the lives of many sickle cell patients from 14 years old to 42  years old (the age at which my sister Felecia died of complications from the disease) and now mid 40’s!  However, more needs to be done.  WE. NEED. A. CURE.

I’m currently 38 years old (unless I’m in Vegas) and what’s sadder to me than the thought of dying in about 4 years is the thought of little girls and boys like the ones pictured above not AT LEAST making it to adulthood with their eye sight, limbs free of sores, chests without ports, all of their organs mostly in tact and functioning well, and the ability to live life outside the bounds of this deadly disease.

I know it’s not as beautiful as some of the fancy invitations that I post on Instagram and Facebook, but all of this is why I am so passionate about Sickle Cell Disease and planning events to raise money to help better the lives of other patients and, eventually, find a cure.

If you know me or my sister personally, if you or anyone you know has ever been affected by Sickle Cell Disease, if you are as tired as I of seeing people suffer through no fault of their own, if you’ve ever been saddened by your favorite entertainer losing their fight with Sickle Cell Disease, then please allow your voice to be heard by clicking here to make a donation to the Sickle Cell Disease Foundation of California of at least $25.00!

I know today’s entry was long, but I thank all of you for making it to the end.

XO Jon’ette



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