In honor of Sickle Cell Disease month Elle Cole from Cleverly Changing graces the Parenting Cipher with her experience and knowledge of Sickle Cell Disease. You may be wondering why Sickle Cell Disease is important to People of Color when it seems like only a small amount of people have it. In this episode, Elle shines the light on why Sickle Cell Disease is important to our community even if we don't have the disease. While also discussing the stereotypes within our community when it comes to Diabetes and how you can support yourself and loved ones. She also shares how she has supported her daughter who has Sickle Cell Disease through homeschooling, family environment, diet, and teamwork. She shares some homeschooling tips for parents that help their child when the school can't provide the supports that are needed while not placing additional pressure on them.
About Elle Cole
Elle Cole is a mom of twin daughters, one of whom is living with Sickle Cell Anemia. She serves as a health advocate for Sickle Cell Disease and Type 1 Diabetes. She is an ambassador for St. Jude Children’s Research Hospital. And raises awareness about Sickle Cell Disorders to help make the quality of life for people living with genetic disorders and autoimmune diseases better. Each day thousands of people follow her journey on cleverlychanging.com, Instagram, Facebook (CleverlyChanging), and Twitter (CleverlyChangin). Elle is a recipient of a Bronze Congressional Award and has been featured on NPR, ABC 7, BBC World Service Radio, and a guest on many podcasts. She is a writer, motivational speaker, and social media strategist. CleverlyChanging.com and the Cleverly Changing podcast are a go-to resource on health, wellness, finances, and parenting. She is also a passionate storyteller. She holds a B.A. degree in English and History.
Donate Blood
Raise awareness through social media retweets and reshare. Talk about it. #30sicklecell #sicklecell
Donate to Sickle Cell organization ( https://sicklecellconsortium.org/) Sickle Cell Disease Coalition (http://www.scdcoalition.org/)
Bone Marrow, Stem Cell Therapy, Gene Therapy by joining Be The Change . You can also join by texting sc3carley to 61474
Timestamps
2:00 What is sickle cell disease?
3:36 Sickle Cell Trait
5:45 Mandatory testing at birth
7:29 Celebrities that have Sickle Cell
10:00 Difference between type 1 and 2 diabetes
16-17:46 Self Advocating for your health
18:46 Sickle Cell Testing
20:00 Coloring Book
27:00 Quote " There is no healing in shame"
29:00 Black panthers advocating for mandatory testing
31:00 Homeschooling
37:00 Sickle Cell and school
Book link: A Sickle Cell Coloring Book
If you’d like to hear Elle’s favorite song “ Everything, Everything” by Lauryn Hill click on the playlist below
Elle Cole
Website: Cleverly Changing
Instagram: Cleverly Changing
Twitter: Cleverly Changing
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Genie 00:08
Welcome to the Parenting Cipher, where each episode will give you the tools and resources to help your child thrive in school and in life. Please rate and review this podcast. I love to hear your feedback and also hit the subscribe button so you don't miss any upcoming episodes.
Genie 00:23
Hello, everybody! We are blessed to have Miss Elle Cole from Cleverly Changing with us today, and she is a mom of twin daughters, one of whom is living with sickle cell anemia. She serves as a health advocate for sickle cell disease and type 1 diabetes. She is an ambassador for St. Jude Children's Research Hospital, and she raised awareness about sickle cell disorders to help make the quality of life for people living with genetic disorders in auto immune diseases better.
Genie 00:53
Each day, thousands of people follow her journey on cleverlychanging.com. She is a writer, motivational speaker and social media strategist. And cleverlychanging.com and Cleverly Changing podcasts are go-to resource on health, wellness, financing and parenting and on a personal level, she is also a passionate storyteller. I'd like to introduce to you, Elle Cole.
Elle 01:19
Thank you so much for having me. It is an honor to be on your podcast and just share. I love to be able to empower other people and share my stories, so I thank you for having me.
Genie 01:32
I'm so glad that I was able to connect with you. One of the things with the Parenting Cipher is we are about, children with special needs overall and I just want everyone to see their child in the podcast.
Elle 01:46
Yes.
Genie 01:46
So what is Sickle-Cell Disease? I know a lot of times social media creates this idea of what it is, but that's not necessarily what it is.
Elle 01:57
Right. So sickle cell disease is a genetic disorder, so the only way people can get it is from their parents, so we get 23 chromosomes from our moms and 23 chromosomes, from our dads and if a person inherits certain traits, genetic traits from their mom and their dad, then they will actually get sickle cell disease, so sickle cell disease means that the person's red blood cells are not [inaudible 2:28] like a donor. It means that they are shaped like a banana, are sickle, hence the name sickle cell.
Elle 02:37
And it means that when those red blood cells get hard and sticky, they will stick together, all clump up in one section and cause an immense amount of pain. Well, what we need to realize is that the red blood cells carry oxygen throughout your entire body, so wherever the red blood cells go, a person with sickle cell can have complications, so it's not just pain crisis. They can have a complication in their eye. They can lose vision. They can have complications in their hips. Many people have had hip replacements. Just one of the biggest risks is a stroke or organ failure, so it can pose many different complications. That's why it's so serious and it's also the most common genetic disorder, so in our communities, it's something that we need to talk about because it is so debilitating, but it's also something that is a risk factor for so many of us. One in 13 African-Americans in the US actually carry the sickle cell trait.
Elle 03:45
But I also want to point out that it's not just African-Americans who get the disease. Social media is kind of what paints that picture as it's a black disease, but that is actually a myth. When I go out and I speak about being a caregiver, oftentimes my audience members don't look like me and when I first saw that, I was a bit surprised and taken aback and then I begin to hear their stories. So sickle cell disease, people can have it and they generally have the trait wherever there was a warm climate, so if their ancestors are from the Mediterranean, from Turkey, from wherever it was really warm and that country had malaria, that person can have the sickle cell trait, but we also know that people have been intermarrying and having different offspring for many years. So people, they may look a certain way, but the truth is, you really don't necessarily know your genetic makeup that well.
Elle 04:50
And so we are finding that, it is people of all different types of ethnicities and nationalities that have sickle cell disease, so the number one country that has sickle cell disease is Nigeria and the number two country is actually, India, so a large population in East Asia have sickle cell disease, so that's something that you don't hear in social media. We are talking about it, but we need to because the risk factor is all over the world.
Genie 05:22
Whoa! So for parents who suspect their child may have sickle cell disease, what advice do you have for them if something is happening in their child, is it being tested or is it suggested and they're not sure how to proceed?
Elle 05:35
So first and foremost, because this is a genetic disorder, often now in the 21st century, people are being tested at birth, so there is actually new mandated newborn screenings all over the world, not just here in the US. Unfortunately, when my husband and I were born in the 80s, the newborn testing hadn't reached our state, so of course, we all know the states here in the US act as their own countries and they're all different.
Elle 06:12
But thankfully now, most of the states, if not all of them, do require newborn testing and so many different parts of the country require newborn testing, so typically, you find out once that child is born and they don't just test black babies, they test all babies because it is a risk factor for anyone, so typically, a person today, if they are young, if a person is having a baby and they had that baby in a hospital and that child goes to pediatric appointments and whatnot, they're going to find out early on.
Elle 06:47
But if they are maybe from another country that doesn't necessarily have such a progressive medical system, then maybe they don't know or they are older and they're finding out later on in life like Miles Davis, Miles Davis didn't find out that he had sickle cell disease until he was 41 years old. T-Boz was having complications. She didn't find out until she was older as well and so, it's typically people who are older. They knew something was wrong with them, but they didn't necessarily know what.
Elle 07:25
So the symptoms that are more detectable are pain crisis. Pain crisis can vary from person to person. It isn't really this linear thing where it's the same for everybody who has it, but it does present as an immense amount of pain, so if someone is recognizing that they have an unexplainable amount of pain at random times, typically, if you're in an environment that's too hot or too cold or you're exercising a whole lot, that can actually cause and trigger a pain crisis.
Genie 08:02
So when you say pain crisis, is it in certain spots? Is it the whole body? Is it the stomach area? Is it all over.
Elle 08:09
So because the red blood cells are in your entire body, it can really happen anywhere, so it can happen in your little toe. It can happen in your eye. It can happen in your arm. For my daughter in particular, it presents in her back or her stomach. That's typically when she says, "Mom, my back is hurting." And then we start giving her lots of fluids because fluids can really help push those red blood cells. It's not one way. It's not like the treatment that's going to cure all, but it can help because dehydration actually can pose a problem and also trigger a crisis.
Elle 08:51
So one thing that doctors will tell their patients is make sure you stay hydrated and I just want to point out that it's not just for patients with sickle cell disease, but also for people with the trait. I mentioned that one in 13, some reports say one in 12 had the trait but you hear about athletes with the sickle cell trait having complications because they often push themselves to the limit with overexertion and that can also trigger a crisis in a person who has the trait.
Elle 09:24
So a person who has the trait does not have the disease. It doesn't mean that all of their hemoglobin is sickled, it means that they have some normal cells and some sickle cells, but in the event that they are dehydrated and they're pushing themselves physically to the limit, like with a lot of exercise and not filling up and resting when their body tells them that's what they need to do, then they can present complications. It's not for everybody with sickle cell trait, but it can happen and we've really seen it prevalent in sports as well as in the military when they're doing that physical training, so it's more common for a person not to know that they have the trait and you start seeing complications due to again, dehydration and also physical exertion.
Genie 10:18
Sickle cell disease and then you also speak to autoimmune, so sickle cell disease considered an autoimmune disease as well?
Elle 10:27
No, it's not.
Genie 10:29
Okay.
Elle 10:29
So unfortunately, my daughter has sickle cell disease, which is a genetic disorder, and she has Type 1 diabetes as well and so Type 1 diabetes is an autoimmune disorder that doctors don't know what causes it, so an autoimmune disorder that many of us have heard of is lupus.
Genie 10:51
Right.
Elle 10:53
They don't know what triggers it. Some people think maybe an infection or virus can trigger it, but it's basically saying that her pancreas is no longer functioning properly and producing the insulin that she needs to live, so whenever she eats a meal, she has to take insulin and it's not just for sweets. Some people think, oh, your kid is an obese, so it has nothing to do. I didn't give my child sweets or anything like that because she already had a medical condition, so I was very cautious about the type of foods that she ate and I knew that sugar, a lot of sugar just really breaks down a person's immune system, so it was never something that was a part of her diet.
Elle 11:37
But yet, she still was diagnosed at the age of six with type 1 diabetes. It turns out that my husband actually also has type 1 diabetes, so there apparently is some genetic component that doctors are researching now, but they're learning more about it, so that's when I say I also advocate for people with autoimmune disorders, so that's where that piece comes in.
Genie 12:03
Okay, so is it the fact that it's Type 1 diabetes that makes it an autoimmune disease versus type two?
Elle 12:10
Yes, so type 2, they really confuse people by giving them similar names. Type 2, for many people, be controlled with diet. It can be controlled by exercise. You'll hear people say, well, your doctor will tell you, "Lose weight." You'll hear about people being pre diabetic. Doctors will also say after you eat, exercise, so for type 2 diabetes, their body still produces insulin but because of genetics, our lifestyle habits, their body isn't able to use the insulin that they are producing. And that's when doctors will give something like metformin, you can take a pill for it. With type 1, it completely alters a person's lifestyle because like I mentioned, any time you eat a meal, your fruits and vegetables have carbohydrates. We generally, when we talk about carbs, we talk about bread and things like that. Well, most of the food we eat have carbs in it because carbs give us energy, so you really actually need some carbs in order to have energy to move and function.
Elle 13:18
Carbs are not bad, but people with Type 1 diabetes, they cannot break down that food properly because they don't have insulin in their body to help them do so and so a lot of the food we eat, especially rice and noodles, your pastas and things like that, all of those things turn into sugar and like I mentioned, you do have some foods that don't have carbohydrates like meat and also your avocados and cucumbers. They don't really have carbohydrates, but other foods, most everything, even potatoes, potatoes have a lot of carbs.
Elle 13:56
Mangoes. We love mangoes, they have a lot of carbs. Bananas, bananas have a lot of carbs, so you think of being healthy and eating your whole fruits and vegetables, but even your whole foods have carbohydrates, so for type 1 diabetes, the doctors often have them count their carbs in order to know how much insulin they need, because if you get too much insulin, you can actually go into a diabetic coma and die. I mean, I hate to be so frank, but I got to spell it out for people as plainly as I know how.
Elle 14:28
And so you really have to be careful, so you don't want to be too high and you don't want to be too low, so again, it's avoiding the extremes so as a mom of a child with these two illnesses, I just have to have a heightened awareness about what's going on with her body and as a parent who home schools, I have to teach her, listen to what your body is telling you. So we don't only study our academics, we study our body to try to understand this thing, because you can go to a doctor who has expertise.
Elle 15:00
But the truth is, you are with your body. 24/7, so you are going to know your body better than anybody else and so if you want to be able to communicate with your doctor so that you can partner together to help, you know you have a better quality of life then you need to study yourself, and so that's something that I try to incorporate in our household for all of us, because it's not just my daughter who has those health challenges, but all of us need to be understanding ourselves.
Genie 15:30
Absolutely.
Elle 15:30
So that's really what we do and how we live. It becomes a lifestyle for us.
Genie 15:36
I love that. You're teaching her how to know her body and then in turn, advocate for herself.
Elle 15:42
Correct.
Genie 15:42
And one of the issues that I come across sometimes when I talk to people about my boys or even myself is you're trying to tell me what's going on in my body and I'm telling you, that's not what's happening. You already assuming but you know the answer because you're a specialist.
Elle 15:59
Right.
Genie 15:59
But you're a specialist in the disease. You're not a specialist on how the disease is in my body.
Elle 16:04
Right, and all of us, because we are all so different. There are so many different nuances. You have to help your doctor help you and hopefully, you know, if you have a doctor that's not listening to you, hopefully, you have the options to find a new doctor because you pay them. They work for you, they service you and so if you have somebody who isn't willing to be open minded and work with you and listen to you, then you're not going to be able to get the best help that you need because that person isn't even seeing eye to eye with you and you know your body better than anybody else. And so, if that is the case, if you have a health care provider who dismisses you, please find a new one.
Genie 16:49
Find someone new. They're dismissed, they're not in the journey of working as a team and you need to have someone who wants to be on your team.
Elle 16:56
Exactly.
Genie 16:57
Is that why you created the sickle cell coloring book?
Elle 17:01
Yes, so when my daughter was diagnosed, just like most parents, I was hurt, so our story starts when I was pregnant and I found out I was expecting twins and my husband and I, we were going to our appointments, we were going to my appointments together, and I was so happy to have them there. But in one appointment, we were about 20 weeks and the obgyne said, "Hey, I need to test both of you."
Elle 17:32
And so she tested both of us and I don't know what happened. It felt like the test results didn't come back until weeks later, but we found out pretty late in my pregnancy that my husband also had the sickle cell trait. None of his siblings have the sickle cell trait. None of my siblings. I'm actually the youngest of five. None of my siblings had the sickle cell trait, so I did not know and he did not know and so at that appointment, my ob gyne said to us, she said, "You have twins. We don't know if they are identical or not, but your children will have 1/4 chance of having sickle cell disease." So I was like, well, the odds aren't one in four chance, that's twenty five percent and we found out when I delivered that one of my twins has sickle cell trait. They're fraternal and the other one has sickle cell disease, so again, both of my twins do not have it and so I knew that when my daughter was growing up, I said, I was seeing these papers, but I wasn't necessarily connecting with the material.
Elle 18:42
I'm the type of person, I like to see myself represented. I like to feel like the person who wrote it had my best interests in mind that they understood where I was coming from. My daughter was five years old when she had her first crisis. I knew she had sickle cell disease, but she had and we had just spent a whole lot of time trying to get her to be as healthy as possible and when she had that first crisis, even though I had had all this information, I had done the research, it was a true shock to my system and it turned my world upside down.
Elle 19:19
And what I decided to do, I said, as a parent, you never know how long you have with your kids and so that's something that's always in my mind and so I said, what can I give my child so that she knows how she can take care of herself and as a mom who loves to read and write, I would make up these stories for my kids, so I wrote this story and I would share it with my babies because not only do I teach my daughter with the disease, I also teach her twin sister.
Elle 19:55
She may one day be a doctor. I don't know what she's going to be, but I feel like you may encounter friends. You may encounter others and no matter what, because you had this intimate experience with what's going on with your sister, you can help educate people, so I say let's use these tools, let's use this knowledge to help other people and so I wrote the story for my own children and when I started to go out and speak to people, they would say, well, do you have something tangible?
Elle 20:27
And I was like, I just have my stories. I'm a storyteller and I was like, but wait, I do have a story and I didn't publish it. It actually took me six years to see that it was something that my community needed, that they were yearning for because you join these Facebook groups to find support as an advocate and you realize, people are struggling. They're finding out that their child has a disease. They're finding out that this is a total order in many ways because, again, like I mentioned, it's different for everybody.
Elle 21:00
So it's like, well, what can we do? And they have the thick books. Not everybody is going to read the thick book about what's going on with their child, but a coloring book, people might color that with their kids. They might receive that information and so I want it to break that information down in bite sized pieces so that people would know the terms the doctors were using. They would know how to engage with that and teach their kids as they were learning, because that's what I do.
Elle 21:28
So I wanted to give the sickle cell community a part of my household, a part of the legacy that I'm passing on to my children. I wanted to share that with others and so that's really how the book came to be. I wrote it six years ago. I published it in May of 2020 during this pandemic, because when COVID hit, I mean, the sickle cell community, as you know, the black community in general is a bit hard, but the sickle cell community, they're already immuno compromised.
Elle 22:00
So we had parents who were literally just living in fear and so I wanted to share the book because it is a way to understand. I felt like, when you understand what's going on, that helps reduce some of your fears, you can go into this thing knowing and so that's why I created it. Something I'm very passionate about, I'm very proud of and it's been well received, thankfully, within the community, so it's not just for families that have a child with sickle cell disease.
Elle 22:33
If a school is wanting to know what's going on with that child, it really just breaks that information down for a school, for grandparents because as a person who, I have other family members, like I mentioned, I am the only person in my immediate family who has the trait, so sickle cell disease isn't something that runs in my family and when I'm trying to explain it to others that they don't have a medical background, they don't really get it.
Genie 23:00
Right.
Elle 23:00
And so the book actually helps to explain it and so if you are trying to help other people understand what this means, what a pain crisis is, how do I teach my kids how to be healthy? Why it's important to eat fruits and vegetables like your folic acid, your nutrition, all of that comes into play and so, I feel like if you want to help your kid be healthy and have a longer life, you got to teach them now their a little.
Elle 23:28
And so that's why that coloring book is for young kids, because it breaks that information down, so as they grow, you can put other pieces together and grow and so it adds information that they can connect to when they're older.
Genie 23:43
Right. I love it and I want to say thank you. My child does not have sickle disease, but I just love the way that you created this coloring book that informs every one and one of the challenges I have with my boys and family is they don't understand and when I'm trying to explain it, it's not coming across. I need a coloring book.
Elle 24:04
Yes, they could be frustrating because as a parent, you're already like trying to do the best you can and it's like you can Google it. It can just be frustrating trying to share that information with other people and I was like, now I must say, Oh, welI we have this book.
Genie 24:22
Right. I need to get the book just so I can understand more about sickle cell disease and you say, people don't understand, family members don't understand, schools don't understand and when you speak to a doctor, they're using these big terms and I remember when my kids were initially diagnosed, I was looking at medical terms and I could not connect with it and I literally was shaking my head, saying, no, that's not my son. It was another parent's block that I connected with. She was doing a good day in the life of her son and I said, "Oh, yeah, oh, yeah, that's my son. That's my son".
Genie 24:59
But the medical terms, I couldn't connect with, that's why I said the coloring book is awesome.
Elle 25:04
Well, thank you, because I feel like as parents, we know our stories and we love our babies, but we have to share and I applaud you for your podcast because we have to share with other people. In the sickle cell community, for many years, there's been a stigma and shame associated with it and when I first started blogging, people were like, why would you put yourself out there like that? And early on I said, there is no healing in shame.
Genie 25:36
That's right.
Elle 25:37
And we will not be able to grow. We will not get the funding and the research dollars. We need to find a cure if people are hiding behind the walls of their home and dealing with this alone. I'm a really private person, but I said, look, this happened for a reason and if the only reason is for me to be a mouthpiece for others, I'm going to be a mouthpiece. I'm going to use my platforms and I'm going to speak out.
Elle 26:05
I'm going to champion this thing on behalf of my daughter, on behalf of my family, because no other husband and wife are two people who are together, two partners, getting together should go into this, not knowing that this is something that could happen. We have to be informed and so I try to share my story because I want other people to go through this life with the tools to be able to make it and I feel like I wasn't given those tools.
Elle 26:35
So if I can make somebody's life better, I'm going to do that and I'm going to put my shyness aside. I'm going to put my pride aside and I'm going to advocate because first person with sickle cell was identified in 1910. We are in 2020 and we're still struggling with this thing and I feel like if we were advocating and sharing it from the rooftops, like we should have, things would be different now and I want to say that the Black Panthers, they really made a big difference with sickle cell.
Elle 27:11
One of the things that they went out into the community and did was trait testing. So back in the day when someone would say, do you know your status? They are not talking about HIV, they were talking about your sickle cell trait status and the Black Panthers really championed that and so, they don't necessarily get the credit and recognition for what they did in the community and when their whole institution was disrupted, but it really hurt our communities in terms of knowing their status and so that's something that we got to get back to.
Genie 27:48
We do, because I'm learning so much and at this point, it's about social media. I knew T-Boz had it. I didn't I know Miles Davis had it. I did not understand about the traits and this is so informative. I'm like in awe and I wanted to ask you, since everyone's talking about homeschooling, you have been homeschooling your girls since kindergarten?
Elle 28:11
Say since birth, because once you have a baby, you started teaching them. It's like, the knowledge doesn't start when they come of age.
Genie 28:22
Right.
Elle 28:22
You start teaching your babies the moment they come out your womb. I talk about how we read. I've been reading to my babies and trying to educate them from birth and my daughters are early readers just because the very first thing I purchase when I found out I was pregnant was a book because I feel like, there's just so much you can learn from books, so I just love teaching my kids, but I can't take the credit for having the desire to home school them.
Elle 28:53
That was actually something that my daughter's pediatrician, she said to me very frankly in an appointment, your routine checkup, she was like, "I think you should home school your kid." And I'm looking at her like, what? I love school. Like, you could just hear it in my voice.
Genie 29:11
Right.
Elle 29:12
I loved it and it was an oasis and I'm like, what do you mean? I mean, I'm already with my kids 99% of the time because when my kids were little, I chose to quit my job because in daycare I was working at a entertainment company and there was a daycare in the building and I remember my co-workers, their kids kept getting sick from the other kids in the daycare and I was like, okay, so I had this child. She has sickle cell. I'm not going to be able to put her in that daycare and I was like, if I want her to be healthy, I'm going to have to stay at home with her and it was a challenge talking to my husband about, you know, Look, I'm going to have to... I'm going to have to quit.
Elle 29:56
And we ended up doing that. But I thought I would be able to go...You know, you go to school, you get your degree. You're like, yeah, I'm going to do this, I just had these goals and these plans and she was like, you're going to need to homeschool and I talked about partnering with a doctor that you trust, that you feel like has your best interests in mind and because we had that relationship, I found a doctor who sees all of us.
Elle 30:23
She sees me. She sees my husband. She's a family practitioner and so she knows the dynamic of my entire family and so when she said that to me, I took it to heart because we had a relationship, and it was a hard decision because we live in a metropolitan area and things just aren't cheap.
Genie 30:43
Right.
Elle 30:44
I am going to say it's not cheap and entrepreneurship is a whole different ballgame, so I was like, how am I going to make this work? But I was committed to my child and and so, yeah. So from birth, as I say, we have been homeschooling, but we've really embraced it, but I also want to tell people I can't take...I definitely credit the pediatrician with saying we're going to homeschool, but it wasn't completely foreign to my union. My husband was homeschooled until he was in the fourth grade, so I didn't have to convince my spouse that homeschooling was the way to go.
Elle 31:24
He already had an affinity for it because he had such a positive experience and so he was my biggest supporter from day one and that's something that is unique, but I didn't go into this by myself, just cold turkey, not knowing what was happening. I went into it with a spouse who was supportive. Now, I didn't have any other family around, so although I had his support, I didn't necessarily have outside support. People that watch my kids from time to time and things like that.
Elle 31:58
Because when you homeschool, especially from the very beginning, that means you're spending a large quantity of time with your children and so, it is one of the best decisions that we've made. My daughter, I mentioned that first major crisis that she's had. That is the only major crisis that she's had. She has had another diagnosis at the age of six but she hasn't been in the hospital. That diagnosis at the age of six was the only time she's been hospitalized.
Elle 32:29
And so that is a very unique story, but I do attribute it to our healthy lifestyle, but also to the fact that she hasn't been exposed to a lot of germs that children are typically exposed to. Now, we see COVID and you see, well, it's way too germy to put kids in some areas, that has been true prior to COVID.
Genie 32:52
Right. On that note, I have two question. My first question is, for parents whose children do have sickle cell disease and they were in school, and now that we have COVID and all these school districts have different rules and regulations, what are your thoughts on that? I thought, you must keep the kids at home but when you're dealing with something as serious as sickle cell disease and COVID as well, how has your household been dealing with it and what advice do you have to parents who may not have as many options?
Elle 33:21
Right. So what you just said that last in it, there are some families that just don't have that option. They don't and I have to be honest. I understand that there are some kids with sickle cell who will have to go to school and in some cases, it is the best thing for them in terms of their education. Now, for families that find themselves in that position, hopefully, your school is requiring the mask. Hopefully, your school has the money to have hand sanitizer, to allow frequent bathroom breaks, to maybe have a air purifier in the classroom. If they don't, see what you can provide to make that situation in that classroom better, but my heart goes out to those families because to be put in that position is very difficult.
Elle 34:14
And this year, I actually was going to put my daughter in school. She had done so well and I was like, well, she's come of age. She should be fine. She knows how to wash her hands and then COVID hit and I was like, Oh, not your break! And it was like, Oh, this ain't the year. This is not the year for that and so, for me and my household, we've decided to keep our kids home. In the past, we've done co-ops. We've done communities. In the home schooling world, socialization is huge and getting together with other families is huge and so, we've actually not been as active in terms of our co-ops and our communities as we have been in the past, because the truth is, people will send their children to activities.
Genie 35:01
That's fact.
Elle 35:03
And I can't risk it. I can't risk it for my daughter. My daughter, she just loves socializing, she loves to be with her friends and so it's been very difficult for us to be like, well, their co-op is actually doing an outdoor co-op. I thought about having her wear a mask and a shoe and going out there and I was like, but she's smarter than that. You know that and I know better, so for me to allow that, I can't do that with a clear conscience.
Elle 35:29
Now, that's me and that's my personal conviction, so if you feel comfortable, by all means, you do what you feel comfortable doing, but in our unique situation, my daughter doesn't just have one health complication. She has multiples and so, I do have to be extra vigilant and because of that, I've made the decision to keep them home, but I put them into some virtual classes so that they can see other kids and spend time with other kids. I have allowed my children to have cell phones.
Elle 35:58
I really don't like that, but I want them to be able to talk to their friends because I feel like a part of growing up is interacting with others.
Genie 36:08
Exactly.
Elle 36:08
And so I'm trying to be as flexible as possible. Sometimes, I won't lie, one of the discipline measures that I use, I turn the Internet off. Yes, you didn't wash the dishes, you didn't do your chores. There goes the internet and thankfully, we have the Internet system that will allow us to isolate certain device.
Genie 36:31
I need that.
Elle 36:31
Yes and there are apps that will do it, too, because this day and age, kids are like, What? We don't have Internet. They feel like the world is...So that's one of the disciplinary measures that we use, but I think families have to be careful and the flu season was already very difficult for children with sickle cell and for people who know people with sickle cell disease, often on social media, I would see their kids going into the hospital back to back because it's flu season.
Elle 37:02
Some child in their school went to school, their kid got it, and they're in and out of the hospital, so it has always been something that has been very critical for sickle cell families and not all sickle cell families are in the position to work from home, but if they are, I would say, utilize other type of educational avenues to give your kids both the socialization and the academic piece. If you don't feel comfortable which that's a whole another story.
Genie 37:37
Right.
Elle 37:37
You can do it. There are tools, there are resources, but get that information, find out what is going to work best for you, because being a caregiver is hard and I know that not everybody is up for the challenge of educating their kids and being their caregiver and there's no judgment. There is no judgment in this because I know everybody's situation is different and everybody's personality is different. I have a personality where I just love learning. I love seeing my kids love learning and I'm willing to just turn off whatever else I got on, to turn things on for my kids and that's different. Now, as my kids get older, I realize, look, some of this stuff you're going to have to get in other places.
Genie 38:24
Right.
Elle 38:26
Also, as you've been doing it for a while, your patience level changes, too. I've seen my patients level change and so some of their classes, they definitely take elsewhere and you want your kids to have fun, so learning to be something that you're cultivating, you're cultivating a love of learning, not the completion of book . It's a little bit different. My philosophy is a little different, but thankfully, my kids have been thriving academically and we do live in an area and really with COVID, the opportunities for virtual classes, has really exploded. So you could take classes all over the US virtually.
Genie 39:06
Right.
Elle 39:06
So I just encourage parents to find resources that work for them and their kids. Find out what your child is interested in and supplement their learning and that's really what home schooling allows us to do. It allows us to study and learn our children and to see what are their natural talents, what are their natural gifts, how can I help them hone in on those and explore them and become masters? We want our kids to master things and home schooling gives you that opportunity to do that.
Genie 39:40
Yes, it is. It totally is. I was home school for years. For years and it's only at 44, am I realizing why I skipped a grade, why I had a genuine passion of learning just because I was taught to be inquisitive and they used the inquiry method, so I love to learn where I lie to my peers didn't have that because they were in schools from kindergarten all the way up, which traditional schools, because now, we have different types of education curriculums that I use, but back then, you just had the standard one, which was not inquiry-based. It's more of rote, repeat, repeat what I'm saying to you. That's why I want you to memorize. I only want you to memorize that. Now, you ask me any questions.
Elle 40:27
Right.
Genie 40:28
Don't think about it too hard. Don't think about why this occurred. Just repeat after me and then, Oh, you've mastered...That your child has mastered the ability to repeat and memorize.
Elle 40:39
Right.
Genie 40:39
So how can we support people living with sickle cell disease, not just during COVID, but how can we support them in our community be on like, I feel like everyone needs to learn about it most definitely, but where can we get that information?
Elle 40:55
So first and foremost, one of the easiest things that people can do that can just make the life of a person living with sickle cell better, just give blood and I want to just kind of stress that because in the African-American community, we're not always the first to sign up for these blood donations and I honestly didn't before I had a child with sickle cell, but one of the treatments that is constantly used for people with sickle cell is blood transfusions.
Elle 41:28
My daughter is fortunate where she's never had a blood transfusion yet because I know that as she grows, things can change, but for many families, that is really their lifeline. So if people can go out and give blood, that will mean a world of difference because that blood is keeping someone with sickle cell alive.
Elle 41:50
The next thing that people can do is raise awareness. On my platforms, especially during the month of September, I share my story. I write about it, I tweet about it, I create images about it and if you follow any of the hashtags, my hashtag that I use for the month of September is #30forsicklecell, that means 30 days for sickle cell, where I just dedicate myself to advocating for it, then the other hashtag is #sicklecell.
Elle 42:22
Just go into that hashtag and retweet or reshare. If you're on Instagram, you can share a message to your stories. Get these messages out here, because like I mentioned in the earlier part of the conversation, it's the most common genetic disorder in the world. That means that over 20 million people in the world have sickle cell disease and that is a large number. It is still considered to be a rare disease, but that's a large number, and that's why you're starting to see so many more PSAs about it. I was listening to NPR and there was a PSA about it. You're hearing these things because it is so prevalent, so we share these messages, talk about it, talk about it at your dinner table. Talk about it, because a part of raising awareness is taking away the stigma. The likelihood that you know somebody who has it, is probably large. They may not talk about it because there is that stigma and we want to address that.
Genie 43:24
Right.
Elle 43:24
We want to increase the funding. If this is something on people's radar, they will increase the funding because they know this is something that matters to the people. Just last week, my daughter and I were invited to the White House. We chose not to go, but Melania Trump did a symposium. It was a roundtable discussion about sickle cell disease, so it is on people's radar, talk about it and the next thing that people can do, they can donate to a sickle cell foundation.
Elle 43:55
In every state, there is a community-based organization that is dedicated to sickle cell disease. If you want to donate to the national organization, that is the SCDAA, which stands for Sickle Cell Disease Association of America, they are always in need of donations. One of the foundations that I partner with directly that has meant the world to me and my advocacy is the Sickle Cell Community Consortium and that foundation is so phenomenal because it brings all different types of CBOs and foundations together from all over the country.
Elle 44:39
And it teaches us how to advocate for our children, for others, how to apply for grants. It educates us and I'm so happy to be on their education team because education is a huge part of my platform and what I do and they are trying to put some education mandates in place for. When patients go to the E.R., for different schools around the country, they're just creating materials that are tangible, that people can use, but they're building leaders within the community, which to me is one thing for me to advocate for myself, but I'm trying to help other people advocate for themselves.
Genie 45:22
Right.
Elle 45:22
I'm not trying to do this alone, we all have a role to play in this, and so that's why the sickle cell community consortium is so important to me, because you've heard of the saying, If you give a man a fish, you feed him for a day, but if you teach them how to fish, you feed them for a lifetime, so that is what the consortium is doing. They are helping these CBOs, getting funding so that they'll know how and that's no better way to give back. You're teaching people how to help themselves and so, I just would love for people to donate and the other way, I actually this month, if you can, one of the cures that exists, it's not a universal cure, so I want to be very clear that there are sickle cell families who will not be able to have their child cured. One of the cures that exist is bone marrow transplants, stem cell transplants and gene therapy. Gene therapy is brand new. Some people feel comfortable with it. Some people don't. Again, they're going into your DNA and they're splicing things. Of course, I'm really making that very simplistic.
Genie 46:30
Right.
Elle 46:30
But not all of us are comfortable with that because, again, it's experimental and in the African-American community, we all know how we feel about that, so it is not a universal cure. So it's not like, oh, you take this pill and you'll never have these symptoms again. Here's the thing. A bone marrow transplant can help get rid of sickle cell. The very first patient to be cured of sickle cell was in 1983 at St. Jude Children's Research Hospital. She actually had leukemia and sickle cell disease and they were trying to cure her leukemia and found out that by giving her a bone marrow transplant, they also cured her of sickle cell disease. Now, she is still living today, but she does have to take medicine for her entire life to make sure that her body continues to work properly.
Elle 47:21
So a bone marrow transplant come with risk but for some people, when you're looking at life or death, you're going to go ahead and try that and it's also hard for people to find matches. They are doing some matches, like with a parent to a child but ideally, the best matches are two siblings who have the same mom and same dad who are matches. That's not always the case that parents with sickle cell may not have multiple children, so it's very difficult to find matches. But stem cell transplant is also an option for people. You hear about cord blood banking, you can cord blood bank and that's something that I've also done. That's a story for another day but here's the thing, there are some treatments that the community can help with and so, I just kind of outlined the cures that exist. How can the average individual help somebody in those areas? You can actually join the Be The Match Registry
Elle 48:25
You can become a donor and here's the thing. There are 20 million people on the registry and only 4% of those people are African-American, so this month, I partnered with the Sickle Cell Community Consortium, as well as be the match to at least get twenty five people to sign up, that's not easy, so black people help me out. I've partnered with them to raise awareness and get 25 people. I'll sign up. All you do, it takes less than 10 minutes to register. You swab your cheek, you send back your kit, it's completely secure, it's only going into the registry and you may be on that registry for a year. You may be on for ten years. It's until they find somebody who needs your stem cells, or your bone marrow, and they'll reach out to you.
Elle 49:20
But they're going to give you the tools that you need, so I'm trying to increase that registry to include twenty five more people. If I can get more than that, please, by all means, help me out, but that is my goal because I did a podcast with a friend of mine. One of my best friends who joined the registry when she was in college and she did it because we had a friend in high school who had a certain type of cancer.
Elle 49:45
She had Hodgkin lymphoma and it could have been cured by a bone marrow transplant. We didn't know, and at the time I didn't know I was going to have a child that would have sickle cell, so I didn't know my connection to this story when my friend signed up, but here we are, 20 years later, after she signed up and we're talking about it, and she donated her bone marrow and saved the life of someone who was 50 years old.
Elle 50:12
So your difference, you joining this registry can in fact, save a person's life and so that is the message that I am sharing with people. Join the registry and here's how you do it. So you can text SC3Carley to 61474. You text your information to that number and you will be sent that information so you can order a kit and sign up to be on the Be The Match Registry. It would just mean the world of difference and it could really be the difference between life and death for someone, so those are some of the ways that people can make a difference. I just appreciate you letting me share and advocate on your platform.
Genie 51:13
I'd love to have you and I'm looking at all of the ways and they really are touching my spirit just because, like you said, donate blood and one of the things. I'm not going to my story, but I'm RH negative and it's a rare blood type and I had a situation during the delivery of my youngest son and literally, if I had not know my body and did a little bit of research, I would have had some situations during birth where I would have bled out and I didn't understand at the time what being B negative meant. I didn't understand it. It's not that many people who have that blood type and they need people to donate for B negative and this was the very same reasons. It could be someone's life or death and then when you're talking about the bone marrow and I'm thinking about, Oh it hurts, but I'm relating it back to the possibilities that could have had on my life. That I'm most definitely going to to donate, that this tells you how you connected with me, because I don't try to donate anything. It's going to hurt. It's going to hurt so bad.
Elle 52:15
So related to the podcast, because my friend, she shares her experience. They have different methods now where it doesn't hurt, so science has advanced and things are much better here in 2020 than they were when they first started. So I am sharing this because I'm informing people, look, things have gotten better. It's not going to hurt like it did in the past. It's just it's a whole different ballgame today than it was in the past.
Genie 52:41
And that is good to know because the only access that most of us have is media. So I saw a TV show, I saw a movie and I saw a needle and I don't want to do it, and that keeps people away from doing something that means so much to someone else, so thank you for clearing that up for me and everybody else, so I always ask everyone before we end, because this has been so wonderful, what is your favorite hip hop song or song that empowers you?
Elle 53:14
So I love Lauryn Hill and the very first CD that I bought was The Miseducation of Lauryn Hill and her song, Everything Is Everything is my favorite.
Genie 53:25
Yeah. I listen to it this morning. I say, Yes, I always do this, so I have a playlist from my first season. So I put every one song in there and I was like, Oh, I haven't listened to that in a long time. Oh yeah. Everything is everything.
Elle 53:39
Yeah. I think it's so important for us to utilize music. We didn't necessarily talk about. When my daughter is in crisis or she feels something coming on and I'm trying to distract her, music. Music is one of the distraction tools that we use, so the fact that you have a playlist, I've got to get that information, the details, because we've got to add that to our list, because we have to have these tools to be able to apply them when we need them and music is one of those tools. It can make a difference. Being a caregiver, you have to ward against depression and you have to take care of yourself and music is one of the ways that we can do it, so I just thank you for sharing and for creating a space where we can be honest and candid.
Genie 54:23
Right.
Elle 54:24
We can be real about it.
Genie 54:26
Right. We don't have to sugarcoat anything and say, Oh, this is what it looks like. It is perfection and there's nothing perfect about parenting and about life in general. We're all out here just trying to figure it out and like you said, we need to share our stories and shed light, you're not alone, but the person who's listening is not alone. Thank you so much!
Genie 54:48
Always remember, you're doing the best with what you have. Remember to be patient with yourself and your child. Did you know you can support the show from patreon so the Parenting Cipher can keep bringing you great content and guest, just click on page or the link in the show notes. Till next time!
