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Patient Perspectives: Dominique Goodson – Sickle Cell Warrior and President of the SCDForum

Dominique Goodson is a sickle cell warrior, advocate and president of the online platform, SCDForum. After being diagnosed with sickle cell anaemia at the age of five, Goodson has learned to manage her condition and used her experiences to advocate for other people with sickle cell. She works alongside many sickle cell community-based organisations to not only help inform, but to support sickle cell patients and caregivers.

Please note the transcript has been edited for brevity and clarity.

FLG: Hello, everyone, and hello, Dominique. Thank you so much for joining me as we take a look at patient perspectives and how genomics is impacting patient lives. Before we begin, Dominique, if you could just introduce yourself and tell us a little bit about yourself as well.

Dominique: Hello, my name is Dominique Goodson. I am a professional patient advocate. I am from the United States. I work for the Sickle Cell Community Consortium. I am their Senior Project Manager, and I’m also the Dean of Warrior University. I also have an online platform that I created and run called SCDForum, where we give out information about sickle cell and different things – just making sure we provide information for all the warriors and caregivers out there.

FLG: For those who don’t know, would you be able to give a background about sickle cell disease?

Dominique: Sickle cell disease is an inherited blood disorder. In order for someone to have sickle cell, both parents have to have either sickle cell trait or another one that mixes with it, such as beta-thalassemia. Even then, there is a 25% chance of having actual sickle cell disease. Sickle cell is when your blood is shaped like a sickle instead of the regular blood cells, where it’s a doughnut with the hole still in the middle. It causes a number of symptoms. It causes extreme pain, infections, it can cause strokes. But one thing I always tell people is that even if two people have the same type of sickle cell, no two people have the same symptoms of sickle cell – they are very different. Sickle cell patients are not snowflakes – no two are alike.

FLG: When were you first diagnosed with sickle cell?

Dominique: I was five when I was diagnosed with sickle cell. I was out playing in the snow with my foster sisters at the time and I used to always beat my legs because they would hurt, and we didn’t know why. In the United States, we have the newborn screening programme and one of the tests that they screen for is for sickle cell disease. I live in New Jersey, and we did not get our law passed for the newborn screening when sickle cell was added until 1990. So, I found out by physically having a crisis attack. I played in the snow way too long and I ended up not being able to walk because my legs were so heavy, and I was having a crisis attack. I went to the hospital and lucky for me it was the ER doctor that was on duty that night that noticed the symptoms and told them to run the test to see that if I might possibly have sickle cell. And that’s how we found out I had sickle cell.

FLG: What are your first memories of finding out you had sickle cell? How did you try to teach yourself about the disease?

Dominique: For me, it was when I was five and the doctor came in and said you have sickle cell and explained what it was. Some of my family members in past generations had sickle cell, so my aunt knew about it. We searched for doctors because they said, ‘You have to find a haematologist’. I remember going to different doctors and all the doctors saying, ‘Oh she’s not going to make it to 13’ or ‘She’s not going make it to 18’. And my aunt was like, ‘Yeah, we don’t want you as our haematologist.’ And she just kept telling me, ‘Just because they say you have it doesn’t mean it has you, and don’t listen to them when they say how long your life is – it’s up to you and God. No one knows how long you’re going to live.’ Then, I remember her saying, ‘We have to find a doctor that’s not going give us the year that you’re not going to make it to, but say hey, this is the plan of what we’re going to do.’ And the doctor that I got, after like the fourth doctor, was like, ‘Oh she can make it through, she could do all this, she could go to school – everything. This is what we’re going to do.’

I remember he gave me this HUGE medical packet about sickle cell. It was like a book – he made it into a book. He gave it to me, and I remember my aunt making sure that I read it. I read it from back to front. You know, I was only five years old at the time. It took me quite a while, but the medical words that I didn’t know I would look up in the dictionary. Just reading what I could and couldn’t do and reading what things were going to be like for me is my true first memory. Like, ‘Oh snap, this is a horrible disease I’m going to have. I am going to have a hard life.’ So that’s one of the first memories of me realising things are different now I’m no longer like my siblings I’m, in a way, I want to say kind of a freak, but not really a freak. I was about six years old when I finished reading it and was like, ‘Wow, things are going to change.’

FLG: Did that make you want to read around more and take an interest in the disease?

Dominique: God, no – I was six years old! I was trying to figure out why I couldn’t go outside and play with my siblings. But no, at that time it didn’t. The only thing that I focused on more was learning my condition, learning my limits. My aunt would always tell me, ‘Yes, the doctors say you can’t do XYZ. You can’t do this, and you know that your condition is based on the weather. You can’t get too cold, and you can’t get too hot, and all this. But you also need to know your limits and if you want to go outside and play with your siblings in the snow, you need to test that limit. So, you know, to go out for 20 minutes and see, then come in.’

So, for me, at that time, it was a research capacity in a way, but it was learning my limits and learning my condition through me because I didn’t know any sickle cell patients growing up at all. The only ones that I did meet were at the camp that I went to and none of them were in the area I was in. It was just this one girl. She didn’t like me too much. I would be outside playing in the snow with everyone during free time and she would be in the doorway looking like ‘Don’t you have sickle cell? I have seen you in hospital, you’re not supposed to be out there.’ I was like, ‘Says who?’ I was like, ‘I am about to come in. I have got five more minutes – I am going to enjoy my time!’ I remember I was in 5th grade and her mother got upset about what I told her daughter. I said, ‘You can do whatever you want, just know your limits.’ And her daughter apparently got sick from going outside playing in the cold and she told her mum what I told her. Then her mum came to school and told the principal and then they called my aunt, and it was this huge thing. I apologised. I didn’t mean it that way, I was just telling her that she could do whatever she wants but just know your limits, that’s what my aunt tells me. She was like, ‘Don’t tell my daughter she can play in the snow no more. She ended up in the hospital for weeks.’ I was like, ‘I’m sorry.’ It was crazy, but I spent that time learning my condition based on me because I wasn’t around other warriors. It wasn’t like I could speak to other people and ask questions and, granted, I read the book and I always went back to the book for information, but there’s nothing like learning first-hand.

FLG: How did you deal with it at school? What was it like growing up and trying to explain sickle cell to your friends and teachers?

Dominique: Thankfully for me, my aunt, she is amazing. I give her credit for all of it, for the way she raised me. She told me that I must speak up for myself and that I have to make sure that I maintain my grades, get A’s and B’s, because there are going to be times where I’m hospitalised, and I can’t be at school and she doesn’t want my condition to hinder me from completing school or anything. But she also told me to make sure that I fight for myself, whether it’s with doctors or teachers or anything. So, for me it was up until, I think, I was in about 8th grade, my aunt would come in on the first day of school and would explain to the principal, explain to the teachers. And she would also make sure I was there and made me speak as well. As she always said, ‘There are going to be times where I can’t be there with you, so you are going to need to know what to say.’ She made sure she explained to them what sickle cell was and that if they had questions, they could call either my haematologist or my paediatrician or that I would be able to answer questions, or she would be able to answer questions. She made sure that those questions were answered and that I knew about it. Once I got to high school, she told me, ‘Ok, now you’re in high school, you’re getting ready. You got four years before you go to college if that’s your decision. Now you need to learn how to do it for yourself. I’ve been doing it for you for this amount of time – you know what to say, you know what to do and now it’s time for you to do it. You have to learn to speak for yourself and you are going to need to learn how to take care of yourself because I won’t always be here.’

I would just go in on the first day of class and in high school, it’s like the first taste you get where you switch classes and everything, and I would tell the teachers, ‘Look, I have sickle cell disease.’ Most of them had probably never heard of it. I would explain what it was – that I get dehydrated, that I can’t do X, Y and Z, that if I get cold, I just need to make sure. But the nurses had the medication that I needed -they had everything I needed their office. I would always go to the nurse’s office, drop off my pain medicine, or any other type of medicine that I was taking, to them, so if I had a crisis attack in school, I could just go to the nurse’s office. So, I did that with all the teachers and by the time I was a sophomore, most of the teachers knew me. I was an active kid in high school, extra active, so most of the teachers knew me. So, it wasn’t really letting them know, but still letting them know, and the nurses knew me too. But that taught me what to do and prepared me for college because going to college I had to do the same thing. At the time, I did not know that they had the disability plan for college. I didn’t know that, so I went to every teacher and explained to them I might not be in class sometimes, but I will always turn in my work. Some professor was like, ‘Well, I don’t care. It’s not like you have cancer.’ And I’m like, ‘Well, I won’t be back in your class, and I am reporting you to your dean!’ But that is how I dealt with it. I would explain it. That has a lot to do with my aunt. She was amazing to make sure I was prepared for what life was going to be like.

FLG: Did you find that you had support from your teachers and that they would try and be as accommodating where possible?

Dominique: Most of my teachers, yes, were extremely accommodating. Some pushed me further than others, like, ‘I think you could do more, you’re being lazy.’ My godmother was my fourth-grade teacher! Then there were others when I got to college, that I wouldn’t even take their class if they weren’t supportive. One professor, I went up to the front to him and was like, ‘I have sickle cell.’ I had all the notes from my doctor and everything. I had the chancellor of the school backing me. I was like, ‘Here’s her number. You can call her. She knows everything.’ And he was like, ‘Well, if you miss three days of my class, you fail. That’s the rule. It’s not like you have cancer or anything.’ I just remember thinking, that is just awful to say. And it’s hard, because we do have an invisible disease. I had one professor say, ‘Well, you don’t look sick.’ But what does a person who is sick look like? It’s difficult, but I was like, well, they’re ignorant. They don’t understand and it’s not their fault. They probably have never come across a person with sickle cell. But you know what? I haven’t got to take your class!’ Now, in high school, it was something a little different, but all my high school teachers supported me.

FLG: Would you be able to discuss the sort of treatments you have had?

Dominique: My standard treatment that I took when we found out was antibiotics at first, then folic acid, and then it’s the pain medicine for when you’re in pain. I know most people stay on antibiotics until they are five, if I’m not mistaken, but I was five when we found out and so my haematologist put me on antibiotics. I think when I turned around 11 or 12, he was like, ‘Ok, you’re old enough now. We’re going to take you off the antibiotics.’ Now, when I say it was like 2 months after that, I ended up with double pneumonia and was in ICU. My aunt went back to him and was like, ‘No, no, no, we are putting her back on antibiotics’, and I actually stayed on antibiotics until I was 18. Every time they try to take me off of it, I would have extremely bad crisis attacks that were too close of a call for my aunt’s liking. So, I was on antibiotics until I was 18, and then it was just folic acid. I didn’t even know about hydroxyurea until I was in college. Around maybe 19-20, I started kind of regressing back to when I first found out that I had sickle cell, where I was having a crisis attack every two weeks and no one explained to me that once you hit adulthood as a sickle cell patient, your crisis attacks start to revert to when you first had it and you get more and more crisis attacks because of the stress of family, boyfriends, school – adult life stuff. I didn’t know that until my doctor was like, ‘Let’s try hydroxyurea.’ I was on that for a couple of years before I told him I didn’t want to do that anymore because it seemed like it wasn’t working. And then I went back on hydroxyurea and had to go off for just a crazy reason. But those are the only things that I took growing up. I didn’t know that I could have had blood exchange fusions while I was in college to help with the crisis attacks. I didn’t know that when I was in college. That would have probably helped a lot and lessened my crisis attacks. But those were the widely known ones that I knew about and what I took.

FLG: How do manage the condition now, not just your physical symptoms but mentally?

Dominique: Mentally, that took me, is still taking, a while to realise. I do a lot of writing and I kept a journal, and it took me a while to realise what my triggers were. Trying to be a normal college student and do normal things when your normal is different from other normals, where you aren’t able to do certain stuff because you have a condition, was kind of difficult mentally wise. But I ended up learning what my triggers were. I know stress was like a huge part of it and my doctor would always tell me it’s stress. I ended up learning what my triggers were and how to either avoid them or get rid of them. I also realised in college that I’ve been through a tonne of stuff in the short life span that I had been through, that I had not talked about or thought about. Because for you to sit up there and say, ‘I almost died at the age of 12 because I had double pneumonia’, that’s a lot for a 19–20-year-old to deal with, especially when they haven’t dealt with it. So, I also knew that I needed mental help because all that stuff eventually started getting dragged back up when I started having crisis attacks. I did therapy to take care of my mental health. I still do. I think if I see a doctor for my body, why not for my mind? Your mind is extremely important, just as your body is as a warrior. Then I started talking to my doctor, finding out what were some other things that I could do personally that could help me not have so many crisis attacks. What is it that I could do? Is there some other type of medication? And that’s when it came about with hydroxyurea and, of course, me, I do my research and I did my research on it and everything, and I was like, ‘Oh, my God, my hair is going to fall out!’ That was one of the biggest things where I thought I don’t know if that’s worth it.

But I did hydroxyurea, and then I don’t think people realise, but sickle cell is also a progressive disease. So, as you get older, other things start to pop up. I have neuropathy on the left side of my body, so I ended up having to take medication for that. Then, on top of that, I was having chronic pain, not just acute pain, where I would literally wake up every morning and have some sort of pain, and so I eventually had to go on long active pain medication, which I didn’t even know was possible. So, it was also dealing with that too, but those were the methods that I started using. And then as I got older – and I’m not going to say my age – but as I got older, I started figuring out my triggers, knowing what it was. My therapist is a huge help too. Also, making sure I try to eliminate as much stress as possible, which is a little hard when you do the type of work I do and have my type of family. It’s a little hard to just cut out all the stress! But working with that with my therapist and knowing my triggers and making sure I take my medication is what’s helping, and it is also making me get off that long active pain medication. So as things progressively get better, I’m getting to the point where I no longer need that and that just comes with a lot of work!

FLG: Gene editing tools are being increasingly used to develop therapies for people with sickle cell disease. For example, several gene therapies are being investigated. What potential do you think these tools have to benefit patients with sickle cell?

Dominique: I think these therapies have great potential. It could possibly be that cure that most warriors are looking for. Especially if the research comes back and it actually works, where they are taking your own genes and not someone else’s genes, so your body is not rejecting it or you’re not doing it where you have to do a bone marrow transplant and you might run into the host versus graft disease. It may potentially be better health wise and less complications in the future from it. I think that if this works, it’s going to be amazing for the community because this is a hard condition to live with, just with all the things we have to deal with. Not just with the disease itself, but outside of the disease there is a lot to deal with. And if this is going to be the cure for it to end all the pain that comes with sickle cell and the other crap that comes with it too, it’s going to be amazing – it’s going to be something that will change the community forever.

FLG: How can researchers and experts ensure that the ethics of these clinical trials are aligned with that of the patient?

Dominique: What they need to begin with, they need to, at least, have patients and caregivers at the beginning. Don’t come looking for us towards the end where you are doing it and you need us to talk to patients to get them to volunteer to be a part of it – don’t come at that point! You need to have us at the forefront. We have brilliant sickle cell patients that are doctors, biomedical researchers – amazing people that have degrees, that can work with you guys in the same field, that can help and let you know, ‘Oh, you know what, I don’t really think this is something patients would be interested in.’ It’s a waste of money if you put millions of dollars into something and you come to the clinical trial and no patient wants to participate in the clinical trial because it’s something that they would never do as a patient. You could find that out from the beginning if you had a warrior or even a caregiver as part of that just to know. Having us a part of it at the beginning, instead of the middle or the end where you need us to participate in a clinical trial, is a huge part of making sure the clinical trials are a success.

FLG: What made you want to become a patient advocate for sickle cell disease?

Dominique: I think the first time when I thought I should start advocating was when I was in college. I think I was in my third year, and I started having really bad crisis attacks. I had a doctor’s appointment that Friday. I had it where my classes were set up Monday through Thursday and then Fridays I would go home, and I had my doctor’s appointment. I couldn’t wait that long, ended up having a crisis attack in my arm and it was so bad, and all the nurses were like, ‘You need to go to the emergency room. You’re in too much pain – go.’ I went to the emergency room, and they did everything – they gave me the IV fluids and everything. Then, this ER doctor comes up and he’s like, ‘So what’s the problem?’ And I said, ‘I’m having a crisis attack and ran out of pain medicine because I don’t live down here, but I had a doctor’s appointment today and was supposed to get more.’ He looks at me and said, ‘All you people are alike!’ And I was like, ‘Are you talking about Black people (because he was White)? Because I’m confused’. He was like, ‘No, I am not talking about Black people, I am talking about all you sickle cell patients are alike – all you want is drugs.’  He then proceeded to write a prescription, threw it at me and said, ‘Give her a shot of Dilaudid and then you can release her.’ I was just like, ‘Oh, my God. I go to Rutgers University. I’m not seeking drugs.’ It just shocked me, and I thought I’m an educated, young, Black woman who some people would just look at and think, ‘She’s sweet, she has probably never done anything wrong in her life.’ They would be wrong, but still, for you to sit there and accuse me that I’m just seeking drugs and you don’t know me – what are you doing to the people or to the warriors that aren’t?

FLG: People like that shouldn’t be in those positions!

Dominique: He isn’t anymore – I got him fired! He’s not there, but it was horrible. And then I started to pay attention to other things. Because I would go and I would see other patients in the ER and stuff, and most sickle cell patients could tell another sickle cell patient from the look. I always say there is no particular look, but when a sickle cell patient is in crisis, you know we have what they call the ‘sickle cell rock’ – we tend to rock back and forth, or like side to side. I would sit there, and I would watch the doctors and how they would treat the patients. They would treat me completely different, come up smiles and everything. But I would look at how they treated other patients, and it was completely different. It was mean, it was degrading, it was just awful. And I was like that should not be – at all. That’s one of the reasons why I was like you know what? Some people don’t have that voice. They don’t know how to speak up for themselves. I have got a loud voice – I could speak up for me and you!

FLG: What are some of your greatest achievements since you have become a patient advocate?

Dominique: One of the things I can say that I’m extremely proud of is, at my hospital, we got guidelines put in for sickle cell patients for the ER. So, when they come into the ER after their triage and they get to the back, there is no longer this 8-10 hour wait in pain. Now, they are seen by a doctor within the first 30 minutes, they get their first dose of pain medicine. Next 30 minutes, the doctor comes back and checks, and they get their next dose of pain medicine. That’s one of the things I am most proud of because I know some warriors that told me that going to the hospital or ER now is so different as opposed to how it was ten years ago, because we would be sitting in the ER for 8 hours. Another accomplishment that I’m proud of is, I was part of one of four or five CBOs that pushed to get the law passed in 2018 for sickle cell. Us ladies, we all worked very hard to make sure that senators and everything was sorted to make sure the law was passed in 2018. That was also a great achievement for me, well, for us all actually.

FLG: What exactly is the law?

Dominique: It was S.2465, and it’s the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act. It was for research to find out how many sickle cell patients are in the United States to get more research out, more services out to patients and caregivers, and also, to get more funding to local CBOs.

FLG: The field, since you have been diagnosed, has rapidly progressed. What are your hopes for the future?

Dominique: My hopes for the future are a lot, actually. I’m hoping that we get new therapies – we get more new therapies. I know we have had, in the last 3-4 years, at least four new therapies to hit the market compared to when the first one hit. That was like 20 years prior, so I would love to see new therapies that hit the market. I would really love to see a cure that is going to be universal for all warriors. I would love to see our community come together and all, because one of the things in the United States that is a huge misconception is that sickle cell is just a Black disease, and it’s not. There’s Asians, Indians, Caucasians, Blacks. I want to see where no warrior is degraded because of what they have, whether they’re White, Black, Indian or anything – I would like to see that happen. I would like to see a therapy that is going to be universal for all and I know that’s a lot to ask, because there’s so many different variations of sickle cell disease, but I would like to see that. And I may not see it in my generation but knowing that it’s possible for the next generation, or the generation after that, I would be so ecstatic.

I just want to see our community come together and just thrive and finally say, ‘You know what? I am not ashamed that I have sickle cell. I wasn’t in that bedroom with my parents. I have not got no say in it, but I have a say now and I’m proud to say that I have sickle cell!’ I want it also where these pharmaceutical companies add us at the beginning, get some of our sickle cell researchers, our scientists, add them at the beginning so that you know what we, as patients, want for therapies and not in the middle or at the end. I know that’s a lot, right?

FLG: What would you tell younger children who are growing up with sickle cell disease?

Dominique: Oh, wow. A message would be: You have sickle cell. Sickle cell does not have you. By that, I mean just because you have sickle cell does not mean you are not able to do anything and everything you want, that you’re not able to live a normal, regular life – it’s just your normal. You’re able to get married, you’re able to have kids, you’re able to go to college, you’re able to get degrees, you’re able to do whatever you want – just know your limitations. And also, get warrior friends! When I was growing up, I had no warrior friends. I wish I could have talked to someone that had sickle cell when I was growing up to find out, if you’re just sitting down, can a crisis attack come out of nowhere when you were just fine one minute ago. I wish I’d known that – I learned that lesson the hard way! But just having a sickle cell friend that is going to be there and you’ll be able to talk to. I have to thank my friend Sakkiyah Darden – I call them sickle pals – she coined the term. Get a sickle pal because you’re going to need that. Although your friends and family can sympathise and empathise with you, they will truly never understand what is going through your mind, but a sickle pal will because they have experience. They’re going through what you’re going through, so make sure you have a sickle pal. But yeah, you have sickle cell – don’t let it have you!

FLG: Thank you so much Dominique – your attitude is just truly amazing, and I really hope that the future that you want happens, so thank you.

Dominique: Thank you, you are welcome!

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