Thirty thousand people in the United States have cystic fibrosis, and 5 percent of those people are African Americans. At least that's what the statistics show. Michele and Terry Wright believe (and the Bonnell Foundation agrees) that the percentage is actually higher. The problem is that people who are African American aren't being properly diagnosed. This is why the couple (Terry has CF) started The National Organization of African Americans with Cystic Fibrosis. Terry wasn't diagnosed with cystic fibrosis until he was 54 years old. Listen to their amazing journey.
For more information on The Bonnell Foundation, find us at https://thebonnellfoundation.org/
Find the National Association of African Americans with Cystic Fibrosis: https://noaacf.org/
Vertex Pharma - the science of possibility. https://www.vrtx.com
The original music in this podcast is performed by Kevin Allan, who happens to have Cystic Fibrosis. You can find him on Facebook here: https://www.facebook.com/KevinAllanMusic
This podcast was produced by JAG in Detroit Podcasts. https://jagindetroit.com/
Tuskegee information about "testing" of African Americans: https://www.cdc.gov/tuskegee/timeline.htm
Graphic designer: https://cindyromano.com
NOAACF
Laura: Thanks for joining us. Michelle Wright is the co-founder along with her husband, Terry right of the national organization of African-Americans of CF her husband, Terry has cystic fibrosis and he is the president of the foundation.
And Michelle is the board chair. And first we just wanted to start with how your CF journey began. You can explain it, but African-Americans having CF isn't as common. As Caucasians having CF. So it was overlooked for decades for uteri. Right. So why don't you briefly share your story about how that diagnosis process went and then Michelle, talk about why you decided to start this foundation.
MIchele: Absolutely.
Terry: Perfect. Thanks for having me. I really appreciate it. Get the opportunity to tell my story. Terry, right. Hi. It all started as a kid. My journey with CF, just as a kid, just going through many, many. Get frame processes of the disease itself. There was different symptoms that I was living with CF that would be typically identified as cystic fibrosis due to it's not very.
Common or noticeable or recognize in the African-American community? I was just overlooked, basically just overlooked. I remember seeing many doctors on my journey, just being sick all the time. I went through all the different Procedures sinuses operations, pancreatitis, GI problems, hearing problems that mucus was just reaching habit on my body.
I truly believe there's other problems I was having with this yet probably still not even recognized up under the radar of cystic fibrosis, even in the African American community.
Laura: And with all those symptoms, those are red flags, like CF red flags. Had you ever heard of cystic fibrosis before that or had the doctors and they were just missing it?
What happened?
Terry: I'd never heard the word ever spoken at for cystic fibrosis. This is what I used to hear that you have a virus, you have ulcers, you have all these different stomach, you have the flu, just all these different things and what they used to do. Just shoot me with medicine. And I would just suffer.
That was the worst pain ever felt in my life because the GI the cystic fibrosis, it started with me with the GIS system. That's where initially it started just Rican headed with my GI system. I remember seeing many doctors that would look at me and, and legit wondering what's going on with him.
MIchele: I will say when I met Terry.
We did hear of cystic fibrosis. And that's when we walked into it planet because Terry was having, would appear to be pneumonia. We walked into a clinic and doctor, and that was the first time we actually heard of it both for the first time. And that doctor said, if you were not African-American, I would say cystic fibrosis.
And that was the first time they came up. And it did come up again until almost 17 years later, when we walked finally desperate to find out answers. I mean, keep in mind, Terry even had a serious pancreas surgery. He had all these different things, gallbladder removed, but they were treating the symptoms because what was going on, didn't have a name until he was 54 years old.
And at that time, they sent him back to the children's hospital. He spent so many years as a child to have that sweat test. And that's when they finally put a name to this mysterious disease. And at that point, at the age of 54, he was diagnosed with cystic fibrosis.
Laura: So you've only been diagnosed for four years.
I mean, that is heartbreaking and sad. I know what my daughters have gone through. And the digestive part of CF is horrible. Stomach pain, brutal, just unbearable. I cannot believe you had to go through this for 54 years. Have you learned since your diagnosis as far as well? I guess this gets into the advocating and why, you know, you came about with your foundation, Michelle, both of you, but from your experience, why did you decide to move forward this way with your advocacy?
Because
MIchele: if you look at what Terry went through, a lot of assumptions, Stereotypes and bias diagnosis were made on the basis of him simply being African-American can't. So we started our organization because of his story, and we started with a mission to engage, to educate and to re re cystic fibrosis awareness in the African-American community.
And we also wanted it to help to bring valuable resources, knowledge. And empowerment alongside support to CF patients, their families healthcare professionals, again, in our community. So we wanted to reach beyond the diagnosis. If you look at the statistics, the statistics show that less than 5% of individuals with cystic fibrosis.
Or African-Americans we believe this higher. We just believe it's either been misdiagnosed, not diagnosed at all under diagnosed, whatever you want to call it. And so it's important to have a voice in the community. And the national organization of African-Americans was cystic fibrosis, which is also known as no itself.
Is that voice. So we are here with the goal of connecting, engaging, and again, raising CF awareness in the African-American community, but we want to make sure we even go beyond that through our national platform. And I
Laura: bet you're a million percent, right. I bet that there are so many other people that need to be diagnosed in the African-American community.
I talked to a doctor who's done work with CF in Egypt and they just weren't diagnosing people because they didn't think that it existed in Egyptian people, but they've now diagnosed a thousand people and expect to diagnose 10,000 more in the next few years. So. Through your efforts, have you been able to help get people diagnosed or kind of, how do you see this going in the future?
MIchele: It is really making a difference because we have been collaborating with a lot of great organizations. I don't know Laura, if you've heard of the bundle. Organize them
organizations like, but now foundation CFR, I, the cystic fibrosis foundation, CF round table, we've just been working across all these different diverse platforms to bring awareness. To this cause and a lot has been done. We've had an opportunity to speak in a CFC. We had a opportunity to speak at believe it was called a night of hope.
Laura:Fabulous, and really was fabulous. You open the eyes of me and so many people. Yeah, what you're doing is phenomenal. Thank you. We're so glad that you were a part of our first virtual event and hopefully we'll get in person at some point, but. Really, it's just wonderful to meet you both.
MIchele: Thank you.
Laura: I have to say, and I know you agree, our CF community is such a tight knit group. Of course we're helping one another. Right?
MIchele: Absolutely. And we want to make sure that those, we don't reach our reach through Terry's coloring book, Terry's journey to see a flan. And I'm so proud of him because his book.
Was just selected by book authority in the top spot for the eight books to read in 2021. I know your listeners can't see the book, but they can definitely go to our website. NOOAACF,nd take a look at the book.
Laura:We'll put a link for sure. So people will see it on our webpage.
And I think, again, you know, we've been talking about it a lot more lately because. People are talking about racism again, and, and things are being more open, but somebody was CF does need to see themselves. Somebody who is African-American with CF. They need to see it. I know in all my dealings with we have a cystic fibrosis portraits of CF calendar.
Trying to get CF people who are African-American in those calendars, you know, with HIPAA and trying to get to people. It's obviously we have done it, but I just think that it's fabulous. You're a great resource and are helping so many people tell me some of the other things that you're working on now.
MIchele: But one thing we're very, very excited about this actually corresponds with rare disease day, which is February the 28th. We are having the first ever virtual bio emerge conference. And bio emerged stands for blacks. Indigenous and other minority ethnicities with rare and genetic disease. That's going to be on Saturday, February the 27th.
And we can send you a link to share with your audience, but we're going to have some fabulous. Speakers, including Dr. Jennifer Taylor Couser and she's going to speak on great strides and future directions in CF. No one left behind. And if you didn't have a chance to hear her at NAC IFC, she was absolutely phenomenal.
We also going to have Dr. Jason Taylor, another tailor, no relation. That's going to speak on lupus. Clinical manifestations and management. And part of what buyer merge is going to do on an annual basis is feature to different, rare and genetic disease States every year. And since I have lupus and my husband has CLL, it actually would be 27 years for me on Valentine's day.
Then we just felt those were the two, right. Genetic and rare diseases to begin with is fantastic.
Laura: So you will raise awareness about everything that you're doing and I have already signed up for that. Just I've already done that. Sure. Terry, tell me how these past four years have been with a diagnosis.
I mean, has your life changed?
MIchele:
Terry: Laura, this four years been just. Fantastic because it was just a deep breath knowing that, okay, I got the diagnosis now. Okay. Let's go with the treatment. Once you get a diagnosis, you need a treatment so you can move on. So by me, get the diagnosis and now.
That I'm able to have the proper care of the CF care of the chair, a team of qualified caretakers that able to see all the symptoms and able to do what they need to do. Especially my respiratory therapist. I have a dynamic team that really work diligently keeping me. Up and going, because prior to this, I constantly was having those flare ups back to back, back to back that chronic pneumonia, just everything would just hit my body.
And I would always question myself, why am I. Still having all of this pneumonia in my body, it just come out of no place here. I am just having pneumonia. It was just terrifying to me. But, but since those four years of having the proper care has definitely changed my life, my attitude, I got hope. That's why I'm.
Nor say that national organization of African-American is bringing that light in that area to give us hope.
Laura: Absolutely. And you're giving so many people hope and you're in Arkansas. So how is the CF community there? And how is awareness in Arkansas?
MIchele: You got to give a special shout out to Kelly, the executive director and her team go, Kelly.
Yes, we have, we have worked diligently with them. They have the CLF fighter panel coming up. We've had a chance to speak to their board. Terry. Just one of the cl star award for Arkansas. So we are very excited about that. So whether it's local, regional, or national, if we can just touch the lives of one person, then our work is not in vain.
Laura: And have you talked with people who are African-American, who were diagnosed because of your work? Have you had any conversations with anybody
MIchele: it's more anecdotal, like even one of the individuals on our board support just the awareness now of African-American families asking more questions.
Can my child. I have CLL and just bringing the awareness is helping to drive those individuals back to their healthcare professionals that ask those questions. So it's work in progress. And I would
Laura: think with newborn screening now that more African-Americans would be diagnosed. Am I wrong? Or are they being caught?
MIchele: Absolutely correct. And that's why we're working closely again, with all these different organizations working closely with the cystic fibrosis foundation to bring awareness, we do want to bring awareness from a newborn screening perspective, but we know also Terry is not the only one with his testimony.
A lot of Africa is, could have already passed without ever known. It was cystic fibrosis. But those that's out there. That's hearing our story. We have individuals that reaching out to us saying, could I have cystic fibrosis? These are my symptoms. And it's not like you can go to the internet and find a brochure on this for African-Americans.
So we still have a long ways to go. But what's exciting is we have in the discussions we engaging. We're raising awareness, we're educating and we're working in synergy with other organizations to make sure that fewer and fewer African-Americans and other people of color don't fall the cracks.
Laura: let me ask you this with COVID African-Americans are more susceptible to dying from Covid.
MIchele: Three times higher yet. Right.
Laura: So with cystic fibrosis, is there anything like that that we don't know? I mean, I know as far as my girls go, one is usually sicker than the other, but they have the same genetic mutation. So I'm unaware. Is there a difference for people with CF? Is it worse? Is it,
MIchele:I can't tell you this.
And, and Terry can elaborate on this too. The majority of African Americans. Are going to have rare mutations, how that actually correlates to the severity of the disease is something that I would love organization to partner with. Noah's self to find out. I can say Terry disease was so severe. It impacted severely.
I mean, we're talking gravely ill and impacted his sinus. He stayed constantly in the hospital with double pneumonia, his pancreas. Again, I mentioned in 2001, he had a pancreatic go, JJ, Nasta me. When I met Terry, whenever he would eat, he would turn around and bring it back up. And he was constantly going to the emergency room.
What's amazing is something as simple as. Pancreas enzymes completely transformed his quality of life. He was able to eat and keep it down. I mean, we tried to have children and nobody can speak to that more than Terry. And
Terry: prior to using the pancreas enzyme, my food was not even digested at all. I would eat, it would just sit there and just ferment on my stomach.
And I used to wonder why my food is not digested. Had I known I had that curl of disease of cystic fibrosis. The lights would have went off in my head. Okay. That's why my food is not digested. It's just cause of this disease.
Laura: You're getting half your nutrients. I mean, you're sort of starving there and just so much, you're not getting,
MIchele: we always felt we were missing something and didn't have any ideas.
And in late 2016, and it also made sense why we couldn't have children, but in late 2016, he spent Christmas. In the hospital to, you know, through the new year's of 2017, he was in the hospital. And during that time, it was almost like a month back to back. And I knew if we didn't find an answer soon, he wasn't going to make it.
And that's when I just made the bold decision to start from scratch and go to a research hospital. And, and no time they walked in the road and they mentioned. That he's African-American but he appears to have the, the size of cystic fibrosis, but would I appreciate this time versus 17 years earlier, they said let's rule it out.
Thank goodness. That's when everything came full circle and Terry talks about. It being welcome news to him. It was because finally everything made sense. Nobody wants to diagnosis of cystic fibrosis, but nobody wants to have cystic fibrosis and not be dying.
Terry: You know, imagine this Laura, my mother, she was shocked.
Like where did this coming from? She asked me. Oh, Ooh, how you get cystic fibrosis then did it pass from me? And she just had many questions. I also had many questions myself. Keep in mind is all a new area that we were trying to shine some light on it. It was just different just to have any understanding.
MIchele: Through NOAACF is to make sure that knowledge and wisdom and understanding. It's there for our community and for other communities outside of the African-American communities so that they can help in the process as well.
Laura: Did anyone else get diagnosed in your family?
Terry: Made sense in the family? Just kind of went through a family was just kind of having some stomach problems with, you know, they had some ulcer that they had a gallbladder removed. They just had some little things they're dealing with just GI problems, but it never was investigated.
MIchele: I'm going to elaborate even more.
I was talking to his mom, he had a brother. That after learning about Terry's sister fibrosis, she believes he had the class that signs. Terry also had a sister to pass from pancreas. Issue. Wow. Sister's up in Chicago. And so we wonder now, could that be cystic fibrosis? You never know. And if it were not for us making, after all those years of suffering and being seen by every specialist, you can just about think of if we didn't make that drastic, desperate, bold move to just go a new define ouncers.
Keep in mind, Terry would be one of those that probably end up not being here and nobody would have ever connected the dots. Wow.
Laura: That’s amazing. And with your mutation, are you one of the 10% Terry that there is not a CF modulator for?
Terry: Yes. Ma'am, I'm wanting to
MIchele: 10%, but that change the December. So, so that changed recently.
So he is in the 10%. And unfortunately, up until December 21st, it was nothing on the market for that 10% until the FDA made, you know, as spanned it to 600 euros CF Tiara modulators, they expanded to include some of the rare mutations and Terry fortunately. Learn on the 21st, 20, around the 21st, 22nd of December, that one of his rare mutations was included in those 600.
So this is all new ground for us to be counted and be able to take these. And we're hoping that this becomes the norm and not the exception.
Laura: That CF modulator that you've been taking for three weeks. How has that made you feel? Because when one of my daughters went on it. Every day, every moment she could feel something new happening.
What's your experience been?
MIchele:
Terry: GPS system. Prior to that, I was having maybe some problems with my GI things just seemed like it just wasn't going as smooth, so to speak. But since that drug, in fact, even I can tell a difference, even in my long even my recovery climbing stairs, I can recover debt.
Okay. So the big breakthrough for me, I'm very happy with, with the process.
MIchele: His quality of life just seems to be improving. And what better time if you're going to learn, you have cystic fibrosis. The now with all the breakthrough I would add, Terry also has . So we looking forward to the day that a breakthrough comes out for that as well.
Yeah.
Laura: And anyone, if they don't know that it's just a wicked bacteria that really does in most cases kill someone with CF. I mean, it's that bad and they're just really, there is no drug that can fight it right now. So it's horrible. And so we hope that. You know, there is something to deal with that as soon as possible.
And getting back to your foundation, have you closed the gap in the CF community? Are you getting well connected with African-American maybe CF moms who have kids with CF and how are you able to help them? Is it. Noticeable, like, do they say, thank God you're here. Like we weren't connected before. What are you seeing.
MIchele:
It has just been phenomenal. We have had individuals to say, I thought I was the only one. We hear that. So often we have a, roughly 130 individuals in our group. It's probably closer to 135 now. And we have them from all over the globe. I mean, from Africa, you name it and they are so excited to say, now I'm not alone.
So we helped bring information. We help bring fats. But our goal is to also, in addition to engage in and raising CF awareness is to improve the quality of life. But we want to save lives too. Again, if we can get the word out. Don't make an assumption because you're, African-American, you're Brown or you're people of color.
Are you indigenous that you can not have cystic fibrosis?
Terry: You know what Lauren, by having cystic fibrosis cystic fibrosis speaks, it gives out a certain sign. Okay. That there's. Things that happens to your body showing different signs. It's a possibility you have cystic fibrosis. And we want all of this to be seen now because there are so many people that's suffering from this disease.
African Americans wonder why they have these long problems and having this pneumonia, but you got all these different signs chronic migraine headaches, because that being a thick mucus, you just clogging up everything.
MIchele: So we really just want people to know don't make the assumption. You can't have cystic fibrosis because you're starting racial and ethnic background.
Laura: And the other thing I want to bring up is, as everyone knows now, the good thing about COVID is had raised awareness about MRN a and things that can help us in CF with new ways to take medications. Yeah. And also clinical trials, the importance of being a part of clinical trials and the diversity that is needed in these clinical trials.
I mean, I'm sure you're telling African-Americans who, you know, to take part in clinical trials because it matters that there is a representation in all these drugs before they come out, that they're being tested on people of all races.
MIchele: very important to continue. Challenge. I'm from Tuskegee. I was born in a hospital.
Information on Tuskegee (there are many other articles to0)https://www.cdc.gov/tuskegee/timeline.htm
They did the Tuskegee syphilis experiment. And so we've come a long ways with African Americans being in clinical trials, even with the COVID vaccine, there's some challenges. And that's why advocacy through groups like Noah's self is so important to help bridge that gap. Like you mentioned, and to rebuild that trust.
Laura: And do you think there is a gap that is being bridged? I mean, for anyone who doesn't know about the Tuskegee experiments, I mean, can you explain it briefly? Why people, you know of color would be concerned about clinical trials.
MIchele: It's in our DNA because with, with Tuskegee and keep in mind the Tuskegee syphilis experiment, I think it was, it was roughly 40 years.
It ended to my knowledge around 1972 and that in it, because it leaked from a journalist, I believe from New York.
Laura: So we're not talking that long ago.
Hundreds of years. Yeah. It's not hundreds of years.
MIchele: And keep in mind, these individuals were told they had bad blood and even having penicillin on the market that could have helped them.
They were not helping. So it was this mentality that African-Americans, I use as Guinea pigs. So you have your parents, your grandparents, your friends, and all these different things saying don't trust the system. But we have to trust the system and it's time to rebuild the narrative, change the narrative.
Terry: And especially Laura, when you go through this journey and you see many doctors, some doctors telling you that you have the worst pancreas they ever seen in their life. So you think it okay if I fixed this pancreas problem in optics, my health problems. So you get the papers work done, but still got some problems.
So that's not the answer.
MIchele:
Laura: I was just going to say, I'm so glad you're in our community. I mean, I'm sorry that you have cystic fibrosis, obviously. I mean, I I'm sorry about that for my kids too, but really it's made life beautiful in a strange way. It's weird to say. Right. But. We're connected. We've found each other and we're helping you.
I just wanted to end on anything else that maybe I didn't bring up that you want to talk about as far as what you're doing or hope to do in the future.
MIchele: Well, one thing you said in this, this is a tight-knit community, we're in it together. So if there's anyone that wants to partner with us to help move our mission ahead, please reach out to us.
If there's anything we can do to help other organizations we're here, we can't do it alone. I takes a village. So we're here to make a difference. And that takes working together as a family.
Laura: Absolutely. And I might as well ask you, Terry, you, you can have a minute and one second, but I just wanted to officially ask you, so the bond L foundation has the purchase of cystic fibrosis calendar and we are featuring CF foundations that are making a difference.
So do both of you want to be in it?
MIchele: Oh yeah, absolutely.
Laura: Fantastic.
MIchele: It would be our honor.
Laura: This is wonderful. Terry, did you want to add, add a last word
Terry: they has been put on you, the cystic fibrosis, a lot people thinking, okay. I have cystic fibrosis then. Okay.
That's the end of my life. That's not the end of your life. It's still yet year. Still living their life. So now you'd have to know how to manage the live and to manage that life. You have to even change your diet and stuff. Since I I've learned that I have cystic fibrosis things I've eaten in the past we will help flare it up now, I think, okay, let me just leave that alone.
Now, let me change some things. Let me hydrate my body. Keep my body more hydrated. Now just many things that we can do on our Indians. Even just keeping a good attitude.
MIchele: That's so important.
TerryIt's a loving community, Laura.
MIcheleYes.
Laura: Absolutely. Well, we will put contact information on our website and with this podcast, but Michelle and Terry Wright co-founders of the national organization of African-Americans with cystic fibrosis.
Thank you so much for coming on this podcast and raising awareness.
MIchele: Thank you so much.