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.


Sickle Cell Warrior Dylan Celebrates his 5th Birthday and 1 yr with NO Hospital Stays!!!

As I type this Dylan is sleeping in his room with his younger brother.  I think about how many times they’ve been separated because of Dylan’s countless hospital stays.  In fact when I was in labor with his younger brother Dylan was admitted into the hospital.  I gave birth on one floor of the hospital while Dylan was a patient two floors below.  Two months later he was admitted again.

For a moment I believed this was going to be our life forever and that his Sickle Cell diagnosis would keep us bound to a hospital room every couple of months. Most of his hospital stays were due to elevated fever and viral infections.  Some bacterial infections as well including Pneumonia and Strep. His first pain crisis devastated me. My active toddler could not walk due to the pain in his feet. Unlike his other hospital stays Dylan cried for hours and could not sleep during the night. Motrin and Tylenol were not able to successfully eliminate his pain.  This is when they offered my 2yr old morphine. I could not conceptualize giving his tiny 20lb body such a strong drug. Plus if we start morphine at 2yrs old where do we do from here? If he has pain as an adult morphine will be useless if he starts at 2.  I agreed to Tylenol with Codeine and thankfully it worked.

If you’ve ever spent any time in a hospital you know that this isn’t an ideal place for healing.  The nurses will tell you they found me sleeping in Dylan’s crib most nights and wondered how I managed to fit and sleep in a hospital baby crib. I could never leave Dylan alone in the hospital. My sweet little hairy baby.  As he got older I would leave for a few minutes to grab coffee before he woke up.  Once, while we were admitted, a warrior was receiving a blood transfusion and his mom left him alone for hours and he yanked out the tubes and blood was all over his room.

 

2nd Hospital stay June 2014

After countless hours of research, I finally found the right mix of vitamins, minerals and herbs. We also completely cut milk and almost all other dairy products from Dylan’s diet. We also limit meat consumption.  I’m truly grateful that for 1 full year we have not had to spend one night in the hospital or one second in the ER.  Dylan has also been pain free for almost 3yrs.

In the last few weeks we have added EvenFlo to the mix.  Only because his hemoglobin has remained 7-8 and hasn’t budged despite his vitamin regimen.  I’m hoping for a nice increase in his hemoglobin in the next few months.  I’ll report back when we have the results.

mom and dylan fly

Now for the celebration!!!!

In the last year Dylan has lived a very full life! He spent a full year in Pre K with no sickle cell related absences, pain, or hospital stays.  He has been to the pool and beach multiple times.  We even went indoor skydiving with his older brother.  Dylan rode his scooter over 2 miles in Prospect Park without even blinking an eye or taking a break.  In fact he had to come back to get me a few times because I was moving too slow.

We pray that with proper hydration, diet and supplemental vitamin and herbal nutrition Dylan will continue to live a full pain free life.

Happy 5th Birthday Dylan!!!

 

 

 


The Memory of a Sickle Cell Warrior Princess and Beauty Queen Lives On Through Shak’s Hope

September is Sickle Cell awareness month and all over Facebook Sickle Cell Warriors and their families have changed their profile pictures to add awareness frames.  Warriors are sharing facts about Sickle Cell Anemia and discussions surrounding this “rare disease” are happening more and more frequently.  As we share facts about the disease itself we are also sharing our personal experiences with this life threatening and debilitating disease.

sc awareness

Sickle cell anemia an inherited form of anemia — a condition in which there aren’t enough healthy red blood cells to carry adequate oxygen throughout your body. ( 1 )

Sickle cell disease is a group of inherited red blood cell disorders.  In the United States, most people who have sickle cell disease are of African ancestry, but the condition is also common in people with a Hispanic background. Because the disease runs in families, couples planning to have children can have genetic testing. ( 2 )

Warriors diagnosed with Sickle Cell disease may experience frequent pain, organ damage/failure, strokes, pneumonia and a host of other debilitating outcomes as a result of the disease.

It is difficult for some to understand exactly what Sickle Cell Warriors experience because many warriors keep their struggles a secret. They suffer and don’t share gruesome details of the pain they are experiencing.  When speaking with Andrea Hall about her daughter, Shakira Martin, we talked specifically about the “shame” some warriors feel and where it stems from. Andrea shared with me that Shakira did not want anyone to pity her.  She wanted to be like everyone else. She requested her port be placed out of sight so that attention would not be drawn to it.

According to her mom Shakira always had a special zest for life growing up and it continued into adulthood. “Her determination to live a happy fulfilling life transcended all pain.  She made it her life mission to not suffer in silence and wanted her fellow sicklers to do the same” Shakira traveled the world and enjoyed playing mas during Carnival.  She was the life of the party and I can vividly imagine her breaking out of the hospital to go see Beyonce on tour.

One of her biggest accomplishments was embarking on a year long journey to become Miss Jamaica Universe 2011. She was healthy the entire year during the competition and she won!

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Shak Dolphins

Shakira had the idea of starting a foundation to help raise funds for other warriors to encourage them to “Live no matter what!” She knew all too well what it meant to be in pain and stuck in a hospital room.  Thus, Shak’s Hope was born. Shakira lost her battle in Aug 2016 and her mom Andrea leads the foundation in her honor.

ShaksHope_logo-Header

Shak’s Hope provides services, awareness and quality to those affected by Sickle Cell Anemia in South Florida and the Caribbean.   Please consider donating, volunteering or sharing their services with Sickle Cell Warriors who may benefit from the support.

Shaks hope image


Today We Celebrate 10 Months Since Warrior Dylan’s Last Hospital Stay

It’s a celebration!!! Today marks 10 mos since Dylan has been hospital free! We celebrate every month bc we are sooooo grateful! We are not about that hospital life.

Someone asked recently. How is it that Dylan hasn’t had pain in almost 3yrs (Jan 2019 makes 3yrs) but has been in the hospital during that time. Why is he going to the hospital?

Sickle Cell patients are prone to picking up bacterial infections and viruses easily. Their immune system can be compromised by a poorly functioning spleen which many times must be removed very early on. Protocol is that if a SC patient has a fever of 100.4 they must go to the hospital. Usually they have to stay for at least 48hrs to see if the bacteria grows in the culture they take upon arrival. Fever must be gone for at least 24hrs.

Dylan’s last hospital stay we were there for 36hrs for a fever. He was doing so well they let us go early. We are so grateful that our natural regimen is working.

Dylan (at 8mos) below with his great aunt Demetria. Today is her birthday. 🎉🎉


Warrior Mom Highlight – Mom Chooses Natural Approach to Treat Her Daughters Sickle Cell Anemia

Warrior Mom Tamika Norman shares her experience with Sickle Cell Anemia.  Her daughter Micah has been diagnosed with Sickle Cell Beta Thalassemia.  Tamika has chosen to take a natural approach to this disease vs the traditional methods of treating Sickle Cell Anemia.

“My daughter Micah is an 11 year old with Sickle cell-Beta Thalassemia. She was diagnosed at the age of 14 months. What made me go check her out? I noticed that Micah was very small (weight size) for her age and she was a “cry baby”. She would always cry for no reason but since she was my first child I always thought she was just spoiled and wanted to be held. As far as the weight gain if I remember correctly at 13 months she had only weighed in at 16-18lbs. I was referred by a family friend to take her to Children’s Mercy Hospital & see a specialty pediatrician to see what the issue was. Well Dr.Woods did her screenings and test results came back as her having Sickle cell-Beta Thalassemia. More than likely that’s why Micah was not eating or gaining weight.

At 14 months Micah had her first crisis and she was admitted to the hospital for high fever. Her hemoglobin count was not where it needed to be. Micah’s hospital stay was 7 days.

Most of the complications she has experienced has been fever and very seldom does she experience pain. The first medication Dr Woods prescribed her Penicillin, which Micah was allergic to. Then it was a different antibiotic (I don’t remember the name) that she took until the age of 5. For precautions: I/family kept Micah in a bubble. I did not allow her to go outside if it was too cold or hot. I remember not allowing her to ride in grocery store carts, we did not allow anyone to come visit if they had any sign of a sniffle or cough. She pretty much stayed inside until it was time for a doctor appointment. As Micah got older and needed to start school and she was talking on her own to where people can understand her need we did not allow her sickness hold her back from being a child. It was hard to do but it was best for Micah to start exploring on her own.

After age 5 Micah was taken off the antibiotic and we only kept Tylenol w/codeine on hand for pain and Motrin for fever.

She really didn’t have much of a problem during her younger years until she had another crisis March 2017. This was a nightmare I wouldn’t wish on anyone.
During this time all the symptoms were symptoms Micah & I had never experienced before. She had an acute chest problem, heavy breathing, pain, fever and not eating. When Micah screamed at me that she couldn’t breath I was lost all I remember in doing was to put my faith in God & to remain calm because again we had never experienced this. During this time Micah was admitted for about 2-3 weeks because she couldn’t breath on her own & the doctors couldn’t keep her temp down and she had received 2 or 3 blood transfusions. So in all she was down for the entire month of March.

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After the nightmare & Micah finally being herself and doped up with several different antibiotics I noticed Micah had lost weight, skin felt frail and her hair was shedding dramatically I started researching other options to keep her healthy but didn’t know where to start. One night I just so happened did a FB search on Sickle Cell and Tamika Mosley name came she’s an Sickle Cell advocate and assists families interested in taking a natural approach to Sickle Cell. I reached out to Tamika for advice, subscribed to her YouTube channel she had at the time and joined her group and since then  was the best the natural approach has been the best thing I could have done for Micah.

Micah is gaining weight, her hair is almost back to where it used to be, skin don’t feel frail overall I can say “she’s healthy!

The remedies we currently use for maintenance:
high dosage of Vitamin C 4kmg at morning & 4k at night.
Evenflo; 2 capsules a day. 1 morning & 1 night

For infection/pain: 4k vitamin C every hour, ginger capsules 2 once every 3 hours & increase dosage of Evenflo for pain.

For allergies: ACV, water & honey.
ginger capsules every hour

If only I can get her off of dairy(whole milk) I think we are perfect. Since shes love it and it’s adding the weight she needs I’ll let her continue to drink it.

We love the Hematology team who care for Micah! I haven’t had any problems with them at all. The only thing that irritates me to the EXTREME is when they praise Micah & I for eating healthy, but then will turn around & ask me if I want to do a bone marrow with my other daughter. When they start talking like that to me it ticks me off because now I feel that they see my baby as a “money bag” and they have to get money from somewhere when they’ve already told us to “keep up the good work” so in my mind which one is it.

I believe with my response I had given the team they no longer ask me about doing any studies or tests to “experiment” on Micah. I just think it’s a money scheme and I don’t think of my baby or anyone else child that has this disease as a “money bag”.

If you are a warrior mom with a child diagnosed with a serious illness and would like to share your journey with our community please email healthywarriormom@gmail.com


8 Months with NO Hospital Stays – A Sickle Cell Warrior Celebrates Being Healthy & Pain Free

On Oct 2, 2017 I received a call from Dylan’s school. They recorded a fever and I needed to pick him up. I immediately took him to his Pediatrician who sent us to the ER.

While being admitted to the hospital and waiting for a room my grandfather passed away. This isn’t shocking as Sickle Cell Anemia doesn’t show up when it’s convenient. We’ve been in the hospital on Christmas, New Years and I even went into labor with my youngest son while Dylan was being admitted.

However, this last hospital stay was different. The fever never returned and his labs were decent. They let us go in 36 hours. My grandfather was already looking down on us from heaven.

While the date will forever be connected to the day my grandfather left this earth I’m beyond grateful that this was the last time Dylan was hospitalized.

Celebrate this milestone with us. We will be counting down every month Dylan is hospital free until Oct 2nd 2018 which will make a full year. We’ve never made it a full year in fact I held my breath the whole month of March. Every March since he was born we have been admitted to the hospital in March. 2014, 2015 ,2016 and 2017. A whole different meaning for the term March Madness.

This deserves a celebration! Dylan will be 5 yrs old a few days before we make a year. More reasons to celebrate. In January 2019 We’ll celebrate 3 yrs pain free! I’m beyond grateful that God has kept our Dylan healthy.

10 Natural Supplements That May Benefit Sickle Cell Anemia Patients

Dylan.jpg


10 Natural Supplements That May Benefit Sickle Cell Anemia Patients

I have been asked many times to share the list of Vitamins and Herbs we use to keep our Sickle Cell Warrior Dylan healthy.  Dylan is 4 years old and has been taking most of these for close to 2yrs or more.  These are the exact brands we use for his care.  I notice differences when we’ve tried other brands so I’ve stayed loyal to these specific brands.

Liquid Chlorophyll 

Dylan has been taking this brand of Liquid Chlorophyll for over 2 yrs.  In my initial research on natural ways to treat Sickle Cell Anemia this potent plant supplement came up consistently.  I also give it to my younger son and it helps with his stubborn bowels.  This is where we started our natural journey and I believe it has truly been integral in keeping Dylan crisis free for over 2 years.

“On a molecular level, the structure of chlorophyll is very similar to heme, which is a part of hemoglobin present in human blood. Heme, which is what makes blood appear bright red once exposed to oxygen, is bound to proteins forming hemoglobin. Hemoglobin carries oxygen to the lungs and other respiratory surfaces to be released into tissues throughout the body.” (1 )

 

Folate  

The Hematologist prescribed Folic Acid for Dylan immediately.  After discovering the dangers of Folic Acid, which is the synthetic form of Folate we switched to this brand of Folate which Dylan takes daily.  I wrote a full article on Folic Acid here if you’d like to read more.  Folic Acid Facts

Vitamin D3

Vitamin D deficiency is running rampant in all populations, but is extremely high in Sickle Cell patients. I’ve read numerous articles that suggest 98% of the Sickle Cell population having a Vitamin D deficiency. The research for the Vitamin D3 as it specifically impacts Sickle Cell patients is ongoing.  There are currently studies in process to assess the benefits of high doses of D3 up to 7000 IU daily for SCD patients.

“Research in school aged children shows that taking a vitamin D supplement during winter might reduce the chance of developing seasonal flu……..Some additional research suggests that children with low levels of vitamin D have a higher chance of developing a respiratory infection such as the common cold or flu. ” (2 )

Dylan has been diagnosed with the Flu, RSV and Pneumonia.  All of these were lengthy hospital stays.  Since we started him on a high dosage of Vitamin D3 (5,000 IU) he has not had any severe respiratory symptoms. He had one short hospital stay which was less than 48hrs due to fever, but because his numbers were so good they sent him home.

Vitamin E

Vitamin is new to our regimen. Dylan has been taking it for less than a year.Here are my thoughts as a non medical professional.  Sickle Cell is a silent disease at times and you can forget what could be possibly occurring in the body.   When I’m evaluating supplements I always consider that red blood cells have the potential to be sickling and not causing pain, but causing silent damage to organs.  When I see improved blood circulation or “anti inflammatory” I always investigate those herbs or supplements further.

“Vitamin E is an antioxidant and eliminates fatigue by promoting blood circulation and can also strengthen your capillary walls and nourish your cells.” (3)

Zinc

Zinc is well know for its immune boosting properties.  Its included in almost every natural cold remedy and cough drop sold on the market.  What I didn’t know was “Zinc can help with a liver cleanse to reduce inflammation in the liver, reduces free radical damage, helps with nutrient absorption and allows for proper waste elimination” (4)

Sickle cell patients typically have jaundice (yellow eyes) because their liver is processing dead red blood cells.  Sickled cells typically die 10-20 days where normal red blood cells live on average 120 days.  The liver eliminates waste from the blood and when there is a back up of waster jaundice can occur.

B 12

“Vitamin B12 deficiency anemia is a condition in which your body does not have enough healthy red blood cells, due to a lack (deficiency) of vitamin B12. This vitamin is needed to make red blood cells, which carry oxygen to all parts of your body. Without enough red blood cells, your tissues and organs don’t get enough oxygen. Without enough oxygen, your body can’t work as well.” (5)

This describes every Sickle Cell patient.  More and more doctors are adding a full suite of B vitamins as standard treatment for Sickle Cell patients including B6 and B12.

L Glutamine

Endari or L Glutamine was approved by the FDA for treatment of Sickle Cell Disease in patients 5-58 in July of 2017.  I started giving Dylan L Glutamine in October of 2017. We use 1,000mg which is lower than the Endari doses used in the trials. Discuss this prescription with your Hematologist.  L Glutamine is an amino acid.

“Patients who were treated with Endari experienced fewer hospital visits for pain treated with a parenterally administered narcotic or ketorolac (sickle cell crises), on average, compared to patients who received a placebo (median 3 vs. median 4), fewer hospitalizations for sickle cell pain (median 2 vs. median 3), and fewer days in the hospital (median 6.5 days vs. median 11 days).  Patients who received Endari also had fewer occurrences of acute chest syndrome (a life-threatening complication of sickle cell disease) compared with patients who received a placebo” (6 )

L Arginine

“Nitric oxide is a powerful neurotransmitter that helps blood vessels relax and also improves circulation. Some evidence shows that arginine may help improve blood flow in the arteries of the heart. That may improve symptoms of clogged arteries, chest pain or angina, and coronary artery disease.” ( 7)

We have just added this to our regimen and give Dylan 1,000mg daily.

Burdock Root

“If you suffer from an enlarged spleen, burdock root can help. The spleen is a vital “guardian” organ that we rely on to keep the body free from infections, viruses and all kinds of dangerous pathogens. An enlarged spleen is a clear warning sign that the immune system is fighting hard to remove threats from the body but failing to do so because it can’t keep up with high demand.” ( 9)

During our first visit with the Hematologist she taught us how to check to see if Dylan’s spleen was enlarged. Many Sickle Cell patients have their spleen removed because of enlarged non functioning spleens.  I’m grateful that we have not had this issue with Dylan, but I am a firm believer in prevention is better than cure.  We give him 1g of Burdock Root daily.

Yellow Dock

“Traditionally, yellow dock root has been thought to be a blood purifier and general detoxifier, especially for the liver.” (8)

Dylan has been pain free for 2 1/2 yrs but it was not until I added Burdock Root and Yellow Dock did his jaundice improve.

I am not a doctor nor will I ever say that I have all of the answers, but what I do know is that Dylan has not had pain in 2 1/2 years.  His eyes are not yellow and he has not been hospitalized in 7 months. His last hospitalization was for a mild fever and he was released in 36hrs because he was doing so well.  He has never had a blood transfusion and his spleen has never been enlarged.  I know that we are on the right path.  My goal is to keep my warrior healthy and pain free using the most natural methods possible.