Open Letter to Rickey Smiley: ……..and anyone else who thinks dying from Sickle Cell is a Joke.

Dear Rickey Smiley,

My son Dylan was diagnosed with Sickle Cell Anemia at 5 weeks old. Sickle Cell Anemia is an incurable blood disorder that causes pain when sickle shaped red blood cells are trapped in blood vessels. I remember our first doctors appointment where the hematologist taught me how to check my newborns spleen to see if it was enlarged and how to assess whether my 5 week old had suffered a stroke.Both enlarged spleens and strokes are common in patients with Sickle Cell Anemia.

I also remember at 5 months Dylan was hospitalized with a fever. By the time we left the hospital his hands were so swollen and in pain he refused to let anyone touch them or hold his bottle. His sickled red bloodcells were trapped in the tiny blood vessels in his 5 month old hands.

Over his short 5 year old lifespan he’s been in the hospital numerous times some times for weeks at a time. One of the most devastating stays was a painful crisis that rendered him unable to walk when he was 2 yrs old. During this stay he cried out in excruciating pain while I tried to hold it together and decide whether morphine was the best choice for my 2 yr olds 20 pound body.

Did you find any humor in the 3 experiences I just mentioned? Was there any thing funny about witnessing a baby in pain? While reading did you think this is great comedic material? Dylan hasn’t even experienced half of what some other Sickle Cell Warriors have experienced at his age. Some have already had multiple blood transfusions, spleen removal, strokes and other Sickle Cell related complications before the age of 5. Life expectancy for women with Sickle Cell Anemia is 48 and for men with Sickle Cell is 42 yrs old. http://scinfo.org/2018/01/11/sickle-cell-news-for-january-2018/

It was extremely irresponsible for you to list Sickle Cell in the list of fake ailments in your church obituary skit. Your platform is huge and includes many Sickle Cell Warriors? their friends family and loved ones. None of them found this to be funny. In fact if you read the numerous comments on your page and on YouTube you will see how hurtful this joke was to your fans. It was unnecessary for you to include Sickle Cell Anemia in your skit. Its hurtful that this life threatening and life shortening disease is not even taken seriously in our own community.

In December 2018 the government finally decided to take Sickle Cell Disease seriously by approving the law that will increase funding, research and treatment options for the Sickle Cell community

https://www.nbcnews.com/news/nbcblk/bipartisan-bill-aimed-fight-sickle-cell-disease-signed-law-trump-n949691 (

Sickle Cell Anemia primarily affects the black community , your target audience. You will never find a comedian joking about Tay-Sachs or Cystic Fibrosis which are rare diseases that affect a very specific population. These diseases affect less people in the US yet they receive more funding and resources than Sickle Cell Anemia.

Everything is not meant to be a joke or taken lightly. Please consider using your platform to provide more awareness around Sickle Cell Anemia so that others will take our warriors seriously as well. Often are warriors are treated poorly by the medical community who assume they are drug addicts when they come in complaining of pain. Sickle Cell Warriors need the support of their community without being the butt of a poorly thought out joke.

Update – The YouTube video of the segment has been removed thankfully.


5 Folic Acid Facts You Didn’t Know

Dylan was officially diagnosed with Sickle Cell Anemia at 5 weeks old.  We left our appointment with 2 prescriptions, one for Folic Acid.  The doctor explained that Folic Acid will assist in red blood cell formation, which is crucial for sicklers whose red blood cells die faster than normal red blood cells.  I didn’t do much research on it at first because I thought, like everyone else,  that it is a vitamin and harmless.  However, after doing some research on Sickle Cell Anemia, the potential harm of Folic Acid started surfacing.  The risks increase especially in high doses over a long period of time.  Sickle Cell patients take 1,000 mcg of Folic Acid daily for their entire lives.

1. Folic Acid and Folate are NOT the same

Folic acid is the synthetic form of Folate.  Its manufactured to mimic Folate.  Folate is a water soluble B9 vitamin that is naturally present in leafy green vegetables, beets and citrus fruits to name a few Folate rich foods. Folic acid is added to foods like cereal, bread and rice.  Folic Acid and Folate are used interchangeably by the medical community. You will hear doctors and nutritionists talk about Folic Acid and Folate as if they are exactly the same.  I recently read one article where the author uses both Folic Acid and Folate with noting any differences.

2. Folic Acid is Metabolized in the Liver

Why is this important? The MTHF enzyme required to metabolize Folic Acid has a low capacity, leaving unmetabolized Folic Acid in the blood stream to wreak havoc. Some people do not even produce the MTHF enzyme at all.  Folate is metabolized in the mucosal lining of the small intestine.

3. Folic Acid Increases your Appetite 

Folic Acid is often given to increase your appetite.  This may actually explain why pregnant women have insatiable appetites as they are directed to supplement with Folic Acid to prevent NTD ( Neural Tube Defects) in their growing fetus.  During my 1st pregnancy I gained 70lbs.  I incessantly ate fast foods and supplemented with Folic acid as directed by my physician. During my last 2 pregnancies I gained less weight due to me being more health conscious.  My <a href="http://Prenatal Vitamins” target=”_blank” rel=”noopener”>prenatal vitamins also included Folate and not Folic acid. Who knows if this is the reason for the difference but its definitely something I consider.  This doctor certainly thinks there is a link between over eating and folic acid fortification in foods.

4. Folic Acid may cause Cancer

Data from two Norwegian studies that included almost 7,000 heart patients treated with B vitamin supplements or placebo for an average of three and one-half years between 1998 and 2005.

During treatment, blood folate levels among patients who took 0.8 milligrams a day of folic acid plus 0.4 milligrams a day of vitamin B12 increased more than sixfold.

Folic acid and B12 supplementation was associated with a 21% increased risk for cancer, a 38% increased risk for dying from the disease, and an 18% increase in deaths from all causes. (1)

a) Increased risk in lung cancer

b) Increased risk in breast cancer in postmenopausal women (3 )

c) Increased risk of prostate cancer with daily supplementation of 1mg of Folic Acid.  (2 )

5. Folic Acid may cause Seizures

This has not been definitively proven, but what they know is there is a link between Folic Acid and Seizures.  One school of thought is that the risk is only for patients who have a history of seizures.  But WebMD lists seizures as a general side effect when taking doses greater than 1,000mcg daily.  Please consider if you take 400mcg in addition to eating cereals, rice and bread fortified with Folic Acid you may easily creep past the 1,000mcg mark daily.  Sickle Cell patients start at 1,000mcg and are presumably well above if eating fortified foods.

Our Choice:

After weighing the long term risks of Dylan taking 1,000 mcg of Folic Acid daily, We decided to switch him to this brand of <a href="http://Folate” target=”_blank” rel=”noopener”>Folate .

We also are relentless about checking for Folic Acid in any multi vitamin, and foods we consume as a family.  Reading food packages have become a way of life for us.  We realize that it is impossible to remove all toxins from our environment and foods, but we make the best effort to reduce the amount we consume.  Especially for Dylan because Sickle Cell Anemia compromises his immune system making bacterial infections potentially lethal. His liver is also overworked removing dead red blood cells and other toxins from his blood.  Our goal is to minimize the impact of foods and supplements on his body even if it requires me to spend all my days and nights researching.