WEBVTT - Case #06: Antoinette 0:00:04.280 --> 0:00:07.800 There are times where you feel like, oh God, you 0:00:07.840 --> 0:00:09.840 want to die, just if we put out your misery 0:00:09.880 --> 0:00:13.840 because the pain is so bad. We were encountering this 0:00:13.960 --> 0:00:17.840 for the first time when we were working up Miss 0:00:17.880 --> 0:00:22.200 Antoinette's case. She doesn't want people to know or see 0:00:22.239 --> 0:00:26.680 her in that vulnerable state. The patients might be wellnest minute, 0:00:26.720 --> 0:00:29.280 but the next minute they are an organizing pain which, 0:00:29.320 --> 0:00:33.760 if not treated in a timely fashion, could escalate nading hospitalization. 0:00:34.880 --> 0:00:36.599 In the back of your mind, at least for me, 0:00:36.720 --> 0:00:39.120 every day when you wake up, you know, you like, 0:00:39.200 --> 0:00:49.800 thank goodness, I'm not in pain. How terrifying would it 0:00:49.840 --> 0:00:53.760 be to fight an unknown enemy, one you didn't recognize 0:00:53.920 --> 0:00:57.680 and didn't see coming. What if that enemy was coming 0:00:57.680 --> 0:01:04.040 from within a disease even doctors couldn't identify. Nearly half 0:01:04.160 --> 0:01:08.520 of all Americans suffer from some chronic illness, and many 0:01:08.520 --> 0:01:16.759 struggle for an accurate diagnosis. These are their stories. I'm 0:01:16.800 --> 0:01:35.680 Lauren Bright, the checko, and this is symptomatic. Antoinette Elcock 0:01:35.760 --> 0:01:38.000 would be the first person to tell you it takes 0:01:38.000 --> 0:01:39.440 a bit of time to get her to put her 0:01:39.440 --> 0:01:42.960 guard down and open up to people. That is, unless 0:01:43.000 --> 0:01:47.280 you're talking about Soca music or West Indian food. Some 0:01:47.360 --> 0:01:50.720 of the joke sauces can be extremely saucy, so sometimes 0:01:50.720 --> 0:01:53.280 it depends on the brand, like the ones that come 0:01:53.320 --> 0:01:56.960 directly from the Caribbean like less A Jamaic or whatever 0:01:57.000 --> 0:01:59.440 the case may be. There used to spice. I need 0:01:59.480 --> 0:02:02.520 a arrested be for jerk chicken because I've tried to 0:02:02.560 --> 0:02:06.080 make it four times and the first time I made 0:02:06.120 --> 0:02:11.680 it way too spicy. I'll get you an email and I'll, 0:02:12.000 --> 0:02:14.000 you know, think it played by play, like how do 0:02:14.080 --> 0:02:16.600 you season it? You know you do it the night 0:02:16.639 --> 0:02:20.800 before lighting up at the opportunity to share her jerk 0:02:20.919 --> 0:02:24.119 chicken recipe, Antoinette can often take a moment to open 0:02:24.200 --> 0:02:26.400 up when you first meet her. As her best friend 0:02:26.400 --> 0:02:31.960 Anicia Daily explains, she's very much like a consistent person. 0:02:32.680 --> 0:02:36.440 She's loyal. She definitely has your back, like she'll eventually 0:02:36.440 --> 0:02:38.600 warm up to you when she meet you a couple 0:02:38.639 --> 0:02:43.799 other times, but um, don't take your personal Ansia and 0:02:43.840 --> 0:02:46.480 Antoinette have known each other for over twenty five years, 0:02:46.800 --> 0:02:50.119 becoming friends back in elementary school. When they were young, 0:02:50.240 --> 0:02:54.440 Antoinette faced many moments with her peers that would reshape 0:02:54.480 --> 0:02:57.400 how she saw the world and how she felt the 0:02:57.440 --> 0:03:00.640 world saw her moments that made aunt when I feel 0:03:00.840 --> 0:03:05.760 embarrassed about having sickle cell disease. Sickle cell effects more 0:03:05.800 --> 0:03:09.000 than one hundred thousand people in the US alone and 0:03:09.120 --> 0:03:13.480 lowers one's life expectancy from seventy eight to fifty four years. 0:03:14.120 --> 0:03:18.160 It's a disease that Antoinette has been battling her entire life. 0:03:19.360 --> 0:03:23.200 I don't tell people right off because when I was 0:03:23.360 --> 0:03:27.440 in elementary school about eight nine years old, I had 0:03:27.480 --> 0:03:31.640 got sick and I missed a lot of school. So 0:03:31.720 --> 0:03:34.400 when I came back, you know, they was like, okay, 0:03:34.400 --> 0:03:36.480 why were you out, So me being a kid and 0:03:36.560 --> 0:03:39.400 thinking these are my friends, I was just like, you know, 0:03:39.920 --> 0:03:42.560 I have this thing called sickle song. The next day, 0:03:42.560 --> 0:03:46.000 when we came to school, I noticed that the friends 0:03:46.040 --> 0:03:48.760 that I used to hang out with it was very distant. 0:03:49.160 --> 0:03:52.760 So apparently one of the girls went home and told 0:03:52.760 --> 0:03:55.240 her mom like, oh you know, mom, I have this. 0:03:55.320 --> 0:03:57.440 Go to my class. One of my friends, her name 0:03:57.520 --> 0:04:01.480 is in Swine, and she had sickle song. To my understanding, 0:04:01.520 --> 0:04:06.280 the mother was very uninformed because she's like, oh, well, 0:04:06.320 --> 0:04:09.280 we can't be a friend anymore because you have sickle 0:04:09.320 --> 0:04:12.480 cell and we don't want to catch it. I can't 0:04:12.520 --> 0:04:16.640 imagine how traumatic that must have been for you in 0:04:16.800 --> 0:04:22.400 elementary school to be honest about your what you're dealing 0:04:22.400 --> 0:04:25.960 with in terms of a health challenge, and having kids 0:04:26.320 --> 0:04:31.960 treat you as if you're contagious. So from that, I 0:04:32.040 --> 0:04:37.200 hesitated a lot, a lot to tell people that I 0:04:37.240 --> 0:04:42.320 have su so and I even have boyfriends that we dated, 0:04:42.480 --> 0:04:47.000 and to this day they don't know. Sickle cell caused 0:04:47.000 --> 0:04:51.599 down Toinette considerable pain and torment, the complications of oregon 0:04:51.680 --> 0:04:54.400 damage from this disease, and on top of everything else, 0:04:54.920 --> 0:04:59.120 feeling excluded and embarrassed or all she knew, But it 0:04:59.160 --> 0:05:02.080 would take a long time for Antoinette to understand and 0:05:02.160 --> 0:05:06.000 vocalize that there might be more to her experience than 0:05:06.120 --> 0:05:11.480 simply sickle cell. Taking a step back, what is sickle 0:05:11.560 --> 0:05:15.240 cell and how does it manifest itself in people? Sickle 0:05:15.279 --> 0:05:18.880 cell disease is an inherited red blood disorder which is 0:05:18.960 --> 0:05:24.720 characterized by chronic anemia, unpredictable episodes of pain and damage 0:05:24.760 --> 0:05:28.080 to the internal organs that begin in early childhood, and 0:05:28.160 --> 0:05:31.800 it leads to altered functioning, poor quality of life for 0:05:32.000 --> 0:05:35.680 patients and early mortality. This is in a nutshell about 0:05:35.680 --> 0:05:40.520 cickle cell disease. That's Dr John Mattu, Antoinette's doctor and 0:05:40.560 --> 0:05:43.599 the director of the adult sickle cell program at King's 0:05:43.680 --> 0:05:47.520 County Hospital in Brooklyn. He's been seeing Antoinette for almost 0:05:47.520 --> 0:05:52.080 a decade now and fully understands her illness. Their relationship 0:05:52.120 --> 0:05:55.880 would become integral to Antoinette learning to manage her symptoms. 0:05:56.480 --> 0:05:59.920 These times where you could have pain in one place, 0:06:00.440 --> 0:06:03.839 but it's times where as you linger and as it 0:06:03.920 --> 0:06:07.600 goes on, it's moving from your backs and your arms 0:06:07.600 --> 0:06:13.120 and your legs, you know, and then full on crisis. 0:06:13.120 --> 0:06:17.520 So crisis basically is debilitating pain for a patient with 0:06:17.600 --> 0:06:22.480 sickle cell disease. It is quite unpredictable. The patients might 0:06:22.480 --> 0:06:24.440 be wellnest minute, but the next minute they are an 0:06:24.480 --> 0:06:27.839 orgonizing pain, which if not treated in a timely fashion, 0:06:28.279 --> 0:06:32.840 could escalate needing hospitalization. The sickle cell is detected by 0:06:32.880 --> 0:06:36.039 a blood test that is part of a routine newborn screening. 0:06:36.720 --> 0:06:39.760 Being faced with the complications of sickle cell from birth, 0:06:40.240 --> 0:06:43.880 Antoinette was not expected to live long. In fact, her 0:06:43.920 --> 0:06:47.720 initial doctor has painted a very grim picture for Antoinette 0:06:47.920 --> 0:06:50.880 and her parents the doctor turns to my mom and 0:06:51.000 --> 0:06:54.320 was like, oh, woll enjoy her now while you can, 0:06:55.120 --> 0:06:59.440 because the life expectancy. If she lives to see five 0:06:59.520 --> 0:07:02.640 years old, say thank god. So then when I turned five, 0:07:02.960 --> 0:07:04.800 they're like, okay, well if she lives to seats in, 0:07:05.160 --> 0:07:07.560 say thank god. Then it was like, oh maybe when 0:07:07.560 --> 0:07:11.680 she's eighteen. Every year were telling this lady that John 0:07:11.760 --> 0:07:14.160 is going to die. At this age. I can't even 0:07:14.200 --> 0:07:20.800 imagine how difficult that must have been for your mom 0:07:20.840 --> 0:07:25.280 to navigate. I mean, thankfully your mom had a medical 0:07:25.680 --> 0:07:31.400 profession background. As a nurse practitioner, Antoinette's mom was very 0:07:31.480 --> 0:07:35.240 aware of the hardships and complications associated with sickle cell 0:07:35.720 --> 0:07:39.160 but unaware she carried the sickle cell trait until Antoinette 0:07:39.200 --> 0:07:43.360 was born. Her mother couldn't have imagined the particular complications 0:07:43.400 --> 0:07:46.480 her own daughter would face as a child. Growing up, 0:07:46.720 --> 0:07:49.840 Antoinette was often in and out of the hospital battling 0:07:50.040 --> 0:07:53.640 her sickle cell crises, and many times had to bear 0:07:53.680 --> 0:07:58.200 that burden alone. Mama was a single mom, so even 0:07:58.320 --> 0:08:00.840 with me being the hospital, you know, there's some people 0:08:00.880 --> 0:08:04.520 where they can take time off of where she couldn't 0:08:04.560 --> 0:08:07.680 do that. When you're younger, like I don't have nobody 0:08:07.760 --> 0:08:10.480 to advocate for me because my mom is not here 0:08:10.520 --> 0:08:13.520 at the time. These people have to make decisions for me. 0:08:13.840 --> 0:08:16.440 So even when you're young, you're telling them you're in 0:08:16.520 --> 0:08:20.160 pain before they even bring it to you. In pediatrics, 0:08:20.200 --> 0:08:24.119 like they question are you sure you're in me? Those 0:08:24.160 --> 0:08:27.880 were the first glimpses Antoinette had of the struggle to 0:08:27.960 --> 0:08:31.840 receive proper care, a trend that would continue, but the 0:08:31.880 --> 0:08:35.520 exception to that in Antoinette's cases. Dr Mattu when he 0:08:35.600 --> 0:08:39.160 started seeing Antoinette in two thousand thirteen, he noticed there 0:08:39.240 --> 0:08:45.240 was something different about her case. So Anternet actually was 0:08:45.320 --> 0:08:48.240 initially thought to have a variant of sickle cell disease 0:08:48.280 --> 0:08:53.240 called SC, where somebody inherits THEES or the sickle gene 0:08:53.280 --> 0:08:56.160 from one parent and a C gene, which is another 0:08:56.160 --> 0:08:59.120 type of human globin from another parent, and that's not 0:08:59.160 --> 0:09:02.439 a normal type of monk globin. In and on It's case, 0:09:03.000 --> 0:09:06.880 she was suffering from complications of sickle cell disease which 0:09:06.920 --> 0:09:11.480 were not as expected for somebody with SC. So we 0:09:11.600 --> 0:09:14.760 noticed that uniqueness in her disease and we thought that 0:09:14.800 --> 0:09:19.160 we should look further. Dr Mattou's approach to care considered 0:09:19.160 --> 0:09:22.600 the person behind the disease, and that is exactly why 0:09:22.679 --> 0:09:26.520 Antoinette has always appreciated going to him for care and 0:09:26.679 --> 0:09:29.160 was able to open up to him and alleviate some 0:09:29.200 --> 0:09:32.480 of the shame she had been carrying. But something still 0:09:32.679 --> 0:09:35.800 wasn't quite right. The crisis and visits to the hospital 0:09:36.080 --> 0:09:38.880 were too recurrent for it to be just the diagnosed 0:09:39.000 --> 0:09:45.120 sickle cell. Very frequent hospitalizations. She needed stronger pain medications 0:09:45.160 --> 0:09:48.400 to control her pain, which was quite out of the 0:09:48.480 --> 0:09:52.240 ordinary for somebody with the type which we initially thought 0:09:52.280 --> 0:09:55.240 she was having, which is the SC type which I 0:09:55.360 --> 0:09:59.720 mentioned earlier. That type is supposed to be slightly less severe, 0:10:00.400 --> 0:10:03.800 so thinking that she has SC, we were treating her, 0:10:03.880 --> 0:10:07.400 and then we saw that her presentation and the manifestations 0:10:07.520 --> 0:10:10.480 of her disease were most severe in terms of the 0:10:10.600 --> 0:10:14.839 frequency and the severity of the pain crisis. There are 0:10:14.920 --> 0:10:18.680 times where you feel like, oh God, you want to 0:10:18.720 --> 0:10:20.839 die just if we put out your misery because the 0:10:20.880 --> 0:10:25.960 pain is so bad. On top of the social exclusion 0:10:26.000 --> 0:10:30.080 and judgment, she has to constantly deal with sickle cell crises, 0:10:30.440 --> 0:10:32.480 which have caused her to spend a lot of time 0:10:32.520 --> 0:10:36.200 in the hospital, missing everyday events, and even making it 0:10:36.280 --> 0:10:38.720 hard for her to hold down a job. At times. 0:10:39.480 --> 0:10:43.640 Many patients with sickle cell disease have problems affecting the 0:10:43.720 --> 0:10:46.640 day to day life. They are unable to keep their job, 0:10:47.240 --> 0:10:51.120 or they are unable to finish their education. Because sickle 0:10:51.160 --> 0:10:54.960 cell disease causes pain crisis, they end up in hospital 0:10:55.000 --> 0:10:58.120 and they lose valuable time off work or school, and 0:10:58.559 --> 0:11:01.560 this really impacts not only the life but also the 0:11:01.600 --> 0:11:05.480 life of the families which they support, their children, their parents. 0:11:05.559 --> 0:11:08.800 If they're supporting them so really sickle cell disease, we 0:11:08.840 --> 0:11:12.239 would consider it as a social problem. Therefore, our relationship 0:11:12.280 --> 0:11:16.360 with patients including Internet is not just in a formal 0:11:16.520 --> 0:11:21.120 level in a doctor patient relationship level, but also more 0:11:21.200 --> 0:11:24.520 personal actually talking to them a little bit about how 0:11:24.640 --> 0:11:28.240 they're facing life's challenges, how they are actually able to 0:11:28.320 --> 0:11:32.400 cope with the disease. Dr Mattu has always taken antinette 0:11:32.440 --> 0:11:36.280 symptoms seriously, haven't taken the time and effort to truly 0:11:36.400 --> 0:11:41.240 listen to and understand her. That wasn't always the case though, 0:11:41.520 --> 0:11:44.560 through her sickle cell journey, during which she came across 0:11:44.760 --> 0:11:49.199 many doctors who were immediately skeptical of or didn't believe 0:11:49.360 --> 0:11:52.959 her pain. There's another stigma that they have, and I'm 0:11:53.000 --> 0:11:56.440 sure the selvations will tell you when you go in 0:11:56.559 --> 0:11:59.480 and I hear this a lot. The doctors come or 0:11:59.600 --> 0:12:01.640 then they're just come and the first thing, you know, 0:12:01.679 --> 0:12:03.320 they will look on the chart or look at the 0:12:03.360 --> 0:12:05.480 meds that I'm not toket and they'll be like, oh, 0:12:05.520 --> 0:12:08.640 you have sickle cell. Yes, I have single cell. Oh well, 0:12:08.960 --> 0:12:10.719 you don't look like you have single cell, Like, you 0:12:10.760 --> 0:12:13.480 don't look like a sickler. And I've got that a lot. 0:12:14.040 --> 0:12:17.200 I'm like, what does a sickler look like? I don't understand, Like, 0:12:17.240 --> 0:12:20.839 we don't walk around it stamped on our forehead. You 0:12:20.880 --> 0:12:25.200 understand what I'm saying, Like, don't stereotype us when you're 0:12:25.200 --> 0:12:27.280 telling me, oh, well, you don't look like a sickler. 0:12:27.679 --> 0:12:30.600 What are you trying to imply? I don't have single cell, 0:12:30.720 --> 0:12:33.960 so therefore I don't need the medication that I'm getting. 0:12:34.600 --> 0:12:37.120 Does that make sense? It's not the disease that you 0:12:37.160 --> 0:12:41.440 can see. So how does someone look like because she 0:12:41.440 --> 0:12:45.160 looks put together? Like that's crazy. They have this thing, 0:12:45.320 --> 0:12:49.520 this term call frequent flyer, meaning you're in the emergency 0:12:49.559 --> 0:12:53.800 room every other day. So over her the doctor talking 0:12:53.840 --> 0:12:56.400 and they were like, oh, whoa, she's not a frequent 0:12:56.480 --> 0:13:01.439 flyer inquiring about me. We're gonna give her this medication 0:13:01.760 --> 0:13:04.800 because when you're in pain more than like the it 0:13:04.880 --> 0:13:07.080 helped us better when we get a shower, I v 0:13:07.920 --> 0:13:11.000 and to me, when they give you like pills or 0:13:11.080 --> 0:13:14.520 like for somebody that's in their mind is always there. 0:13:15.000 --> 0:13:17.280 So he's like, you know, we'll give this one pills 0:13:17.320 --> 0:13:21.120 because they are frequent fired. Oh, that's so unfair to 0:13:21.200 --> 0:13:25.240 be very if you're in pain. You're in pain, and 0:13:25.280 --> 0:13:28.560 I'm just like, that's also like a really good thing 0:13:28.720 --> 0:13:32.440 that I'm not there with her when that happens, because 0:13:33.160 --> 0:13:35.720 I don't. I would, I would play, I would lose 0:13:35.760 --> 0:13:41.600 my ship, add one more thing into the pile of 0:13:41.640 --> 0:13:45.839 social judgment and the pain from the actual symptoms having 0:13:45.880 --> 0:13:48.880 to advocate and push to get the proper treatment you need. 0:13:49.520 --> 0:13:53.120 This mistreatment of sickle cell patients in the medical industry 0:13:53.480 --> 0:13:57.439 is sadly pretty commonplace, so much so that Dr Matto 0:13:57.640 --> 0:14:01.160 brought it up unprompted that as so many insidious aspects 0:14:01.160 --> 0:14:03.680 of the disease, and first and foremost is the social 0:14:03.679 --> 0:14:07.480 aspects which I mentioned. Another thing is about misconceptions about 0:14:07.480 --> 0:14:10.880 sickle cell disease. Even among health professionals. There are lots 0:14:10.880 --> 0:14:14.520 of misconceptions about sickle cell disease. Our patients with sickle 0:14:14.520 --> 0:14:17.080 cell disease have an increase in their health care usage. 0:14:17.520 --> 0:14:19.680 They often presenter the emergency room or they have to 0:14:19.720 --> 0:14:22.400 come to their doctor actually for treatment of their pain. 0:14:22.480 --> 0:14:26.120 Crisis patients are often in the emergency department and are 0:14:26.160 --> 0:14:28.840 often admitted as in patience in the hospital, and many 0:14:28.880 --> 0:14:31.960 times that pain symptoms are not taken seriously and they 0:14:31.960 --> 0:14:35.400 are not treated adequately by health care professionals. It seemed 0:14:35.480 --> 0:14:39.560 Antoinette was never enough, not appearing sick enough to be 0:14:39.640 --> 0:14:42.680 treated for her sickle cell yet not well enough to 0:14:42.720 --> 0:14:47.200 avoid judgments based on misconceptions about her conditions. And if 0:14:47.240 --> 0:14:50.320 no one was there to take her symptoms seriously, then 0:14:50.400 --> 0:14:54.360 how could she expect anything to change. Her symptoms continued 0:14:54.440 --> 0:14:58.560 to worsen in their intensity and frequency, one crisis so 0:14:58.680 --> 0:15:03.360 severe that it stopped causing a miscarriage. That's another thing 0:15:03.440 --> 0:15:06.280 too that I guess that made me strong, because it 0:15:06.400 --> 0:15:08.480 was one day I was coming from work and I 0:15:08.520 --> 0:15:11.240 felt like a crisis was coming on, like my shoulders 0:15:11.240 --> 0:15:13.440 and stuff was herring, But in my mind, I'm just 0:15:13.480 --> 0:15:16.840 trying to get home. Then my stomach started really hurting, 0:15:16.880 --> 0:15:19.720 like my stomach cursed. My stomach cursition be happening because 0:15:19.880 --> 0:15:23.560 I'm pregnant and I'm standing at the corner of the 0:15:23.640 --> 0:15:26.200 street to cross the street, and I'm just standing there 0:15:26.240 --> 0:15:30.840 be over. Nobody stopped, nothing, nothing, nothing. When I got 0:15:30.880 --> 0:15:34.960 home and you know, I pulled down my clothes, that's 0:15:35.000 --> 0:15:40.840 when everything just blew. I never took the time to 0:15:40.920 --> 0:15:43.640 really process that. I went to work the next day. 0:15:43.800 --> 0:15:46.240 I didn't go to them and just see room anything. Well, 0:15:46.280 --> 0:15:48.520 when I went to my g y and I told 0:15:48.600 --> 0:15:51.960 him what happened, and he was just like, uh, it's 0:15:52.000 --> 0:15:54.840 to be expected. What's your sickle cell? And by him 0:15:54.880 --> 0:15:57.240 saying that, I was just like, I'm not even gonna 0:15:57.280 --> 0:16:00.320 make a big deal out of this because with the 0:16:00.320 --> 0:16:03.840 way he responded, like do the single sell? Just try 0:16:03.880 --> 0:16:07.080 it again? You know having single soon When you talk 0:16:07.160 --> 0:16:09.920 to like doctors and stuff like that, they make it 0:16:10.000 --> 0:16:14.080 seem like the things that we go through, we should 0:16:14.080 --> 0:16:16.880 be used to it because we have cigle sal and 0:16:16.960 --> 0:16:22.320 it comes with the tempritory. Antonina, I am so sorry, 0:16:23.080 --> 0:16:27.080 it's okay, thank you, No, I mean, I'm I'm so 0:16:27.160 --> 0:16:30.880 sorry that you've been taught that you're just lucky to 0:16:30.920 --> 0:16:40.280 be alive. We'll be right back with Symptomatic, a Medical 0:16:40.360 --> 0:16:52.320 Mystery Podcast. Now back to Symptomatic, a Medical Mystery Podcast. 0:16:55.160 --> 0:16:58.360 It's hard to process brushing off a miscarriage or something 0:16:58.400 --> 0:17:01.040 to just deal with as an ex acted consequence of 0:17:01.080 --> 0:17:05.240 sickle cell. But luckily Dr Mattu wasn't brushing off any 0:17:05.440 --> 0:17:09.080 of her experiences. With each scare, he seemed to be 0:17:09.119 --> 0:17:11.879 getting a better idea of what was really at work. 0:17:12.520 --> 0:17:16.679 Then Antoinette had a very scary crisis, which ended up 0:17:16.720 --> 0:17:20.720 providing the final clue for Dr Mattu to give a 0:17:20.800 --> 0:17:24.920 proper diagnosis. One day, I woke up and I couldn't see. 0:17:25.119 --> 0:17:27.679 Everything was a blur. I couldn't say anything. It's like 0:17:27.680 --> 0:17:31.640 a blood blood blood blur. And I'm the type of person, 0:17:31.680 --> 0:17:34.760 as I told you before. I tried to rough it out, 0:17:35.840 --> 0:17:38.359 and it was like the third day and I still 0:17:38.520 --> 0:17:40.280 was not say like, I couldn't go outside because I 0:17:40.280 --> 0:17:42.919 couldn't say so. One of my associates, she's like, you 0:17:43.040 --> 0:17:46.639 need to go to the castle. This is not safe. 0:17:46.840 --> 0:17:49.480 So I went to the doctor. When they looked in 0:17:49.560 --> 0:17:52.240 my eye, they're like, oh, you have a lot of 0:17:52.359 --> 0:17:56.640 blood in your eyes, a lot of blood leaking. When 0:17:56.640 --> 0:18:00.280 they looked at it, they're like, it's not something more 0:18:00.359 --> 0:18:02.720 was wrong. It was late in the evening she called 0:18:02.760 --> 0:18:05.240 me saying that she had suddenly lost vision. I was 0:18:05.440 --> 0:18:08.880 to rush to the emergency room to get diagnosed, and 0:18:08.920 --> 0:18:12.160 we discovered that the eye doctors had seen her in fact, 0:18:12.560 --> 0:18:15.720 and they had diagnosed that she had damage to the 0:18:15.760 --> 0:18:18.919 inside of her eyes. That right, enough, and that's something 0:18:19.480 --> 0:18:23.480 which we don't see. So the issues with her eyesight 0:18:23.720 --> 0:18:27.639 became a red flag and an aha moment for you. Yes, 0:18:28.440 --> 0:18:30.880 and in fact, she also had a lot of pain crisis, 0:18:31.240 --> 0:18:34.320 which was also not fitting in very well with what 0:18:34.359 --> 0:18:37.800 we thought she initially had. The frequency and severity of 0:18:37.880 --> 0:18:41.760 Antoinette's crises always seemed out of place to Dr Matto, 0:18:42.320 --> 0:18:45.119 But now the effects on her eyesight were the final 0:18:45.200 --> 0:18:49.359 indicator that this wasn't sickle cell like he'd seen it before. 0:18:50.440 --> 0:18:53.439 So we noticed that uniqueness in her disease and we 0:18:53.520 --> 0:18:57.080 thought that we should look further. So we have a 0:18:57.160 --> 0:19:01.600 specialized test called high performance like with chromatography and short 0:19:01.680 --> 0:19:05.240 as HPLC, which is used to detect those abnormal types 0:19:05.280 --> 0:19:08.680 of hemoglobin or variants we call them, which are not 0:19:08.800 --> 0:19:15.119 normally captured on the usual test. So the type of 0:19:15.119 --> 0:19:22.320 secus I have is called cecus or arab initially thought 0:19:22.359 --> 0:19:26.520 to be a prevalent in the Arab countries, which actually 0:19:26.560 --> 0:19:30.400 would have made it prevalent only in that area. That's 0:19:30.440 --> 0:19:35.119 so interesting because you know, this being your area of expertise, 0:19:35.560 --> 0:19:38.639 you mentioned that this is rare. Was this the first 0:19:38.760 --> 0:19:43.000 case that you had encountered? Exactly, This is a very 0:19:43.040 --> 0:19:46.119 first patient I had encountered. It was like, you know, 0:19:46.160 --> 0:19:48.640 oh my god, when I was in medical school, I've 0:19:48.680 --> 0:19:51.760 read about you, like in the books. But because of 0:19:51.840 --> 0:19:54.960 the the part of the world that we're in, and 0:19:55.600 --> 0:19:58.919 never have I ever met or even thought I was 0:19:58.960 --> 0:20:02.760 gonna we're can here have a patient with that kind. 0:20:04.000 --> 0:20:08.959 So this is a variant which is quite severe. It 0:20:09.000 --> 0:20:13.760 produces a variety of complications. It affects many different organs 0:20:13.760 --> 0:20:18.000 in the body, and in particular, damage to the inside 0:20:18.000 --> 0:20:21.399 of the eyes, which is called retinal Retinal damage is 0:20:21.480 --> 0:20:25.480 quite common with this problem. Antonine had finally had a 0:20:25.520 --> 0:20:28.159 doctor who got to the root of her issue. She 0:20:28.320 --> 0:20:30.679 now had a name and a potential way forward with 0:20:30.800 --> 0:20:35.160 treatment for her sickle cell variant. Through all of the procedures, though, 0:20:35.440 --> 0:20:38.440 they could only restore partial vision to her left eye. 0:20:38.840 --> 0:20:40.639 If I keep both of my always open, I can 0:20:40.680 --> 0:20:44.679 see perfectly fine. But with this I can't see nothing. 0:20:44.720 --> 0:20:47.000 It's just like a big blur. So they're like, you know, 0:20:47.080 --> 0:20:50.000 the cells are too far gone due to the circles. Also, 0:20:50.280 --> 0:20:53.960 this is as good as it gets, so it affects 0:20:53.960 --> 0:20:58.359 my organs like very rapidly, so rapidly that even a 0:20:58.400 --> 0:21:02.480 proper diagnosis for her and and a doctor fully digesting 0:21:02.480 --> 0:21:06.480 her symptoms, Antoinette faced the most life threatening crisis yet, 0:21:07.160 --> 0:21:11.720 and sadly, the situation was made worse because a separate doctor, 0:21:11.760 --> 0:21:15.639 not Dr. Matteo, threw her back into that one size 0:21:15.640 --> 0:21:21.920 sickle cell bucket once again. I was probably about seven eight. 0:21:22.240 --> 0:21:25.840 I was in the hospital for seven days. So with me, 0:21:26.000 --> 0:21:29.240 I told them, before y'all do anything, I don't mind 0:21:29.520 --> 0:21:33.040 taking any tests. I don't mind doing anything. But what 0:21:33.080 --> 0:21:35.840 you're gonna do is you're gonna tell me your care plan. 0:21:36.280 --> 0:21:39.560 So I can say, hold up, this doesn't work for me, 0:21:39.680 --> 0:21:42.320 or I did this before and this doesn't work. Can 0:21:42.359 --> 0:21:45.840 you please change it? He had an issue with that, 0:21:46.359 --> 0:21:49.560 so he made a statement, this is how I treat 0:21:49.560 --> 0:21:52.800 also go so patients and I'm not changing it. Y'all 0:21:52.840 --> 0:21:56.720 all getting the same thing, no matter what. I don't care. 0:21:57.600 --> 0:22:00.600 That was his exact words. That same night, I went 0:22:00.640 --> 0:22:03.600 to the bathroom and when I got up to come 0:22:03.600 --> 0:22:08.360 out of the bathroom, I couldn't breathe. So lucky thing. 0:22:08.640 --> 0:22:11.560 The nurses station when my room was a nurses station 0:22:11.640 --> 0:22:14.919 is right across there, and she saw me holding onto 0:22:14.960 --> 0:22:17.439 the wall like I guess. She saw it before I 0:22:17.440 --> 0:22:22.280 could even get it out. And I had coded code 0:22:22.280 --> 0:22:24.760 and means the patient has gone into life threatening cardiac 0:22:24.880 --> 0:22:28.600 arrest or is not breathing as an Antoinette's case, and 0:22:28.640 --> 0:22:33.280 the CODE team rushes to their side to begin resuscitative procedures. 0:22:33.400 --> 0:22:37.639 And when I quoted, they called the team to come 0:22:37.760 --> 0:22:40.600 and they did the X rays and to revive me 0:22:40.720 --> 0:22:44.679 or whatever. Fine. When he changed me over to hematology 0:22:44.720 --> 0:22:49.000 the next morning, I end up quoting again and they're like, 0:22:49.160 --> 0:22:52.920 the oxygen level is very low and if that could 0:22:52.960 --> 0:22:55.159 be due to the pain or whatever the case may be. 0:22:56.000 --> 0:23:00.400 And I end up having a cute chest where one 0:23:00.440 --> 0:23:05.800 of my lungs was retaining water. It collapsed. So after 0:23:05.920 --> 0:23:10.760 that they rushed me straight to Icy. I mean, it's 0:23:10.960 --> 0:23:15.040 very it's very hard to see her like that because, 0:23:15.359 --> 0:23:19.760 like I said, she's very solid and she comes across 0:23:19.800 --> 0:23:23.399 as a very strong woman. But because of that personality 0:23:23.440 --> 0:23:26.520 trait and how people view her, I think that's another 0:23:26.560 --> 0:23:29.359 reason why she doesn't want people to know or see 0:23:29.359 --> 0:23:32.640 her in that vulnerable state. The first time I saw 0:23:32.640 --> 0:23:36.520 her like that, I was like, it was very like. 0:23:36.920 --> 0:23:39.240 I don't even know how to explain the feeling. I 0:23:39.320 --> 0:23:43.159 was just like, wow, I was icy you for two weeks. 0:23:44.320 --> 0:23:46.840 But I said that to say, all of that could 0:23:46.880 --> 0:23:50.520 have been prevented if he would have just listened for 0:23:50.640 --> 0:23:53.320 what works for me and not be like, oh, this 0:23:53.400 --> 0:23:56.480 is how I treat all of you guys. Well, Antoinette 0:23:56.520 --> 0:23:58.800 is now being taken care of closely by a doctor 0:23:58.800 --> 0:24:02.800 who does listen and now has an individualized treatment regimen 0:24:02.840 --> 0:24:06.160 that is working for her. Her crises are happening less 0:24:06.160 --> 0:24:09.680 frequently and are less severe than they once were. All 0:24:09.720 --> 0:24:12.000 of this is a testament to the fighter that she 0:24:12.200 --> 0:24:15.800 is and has been throughout her entire roller coaster with 0:24:15.880 --> 0:24:18.679 sickle cells since the day she was born, since the 0:24:18.760 --> 0:24:21.760 day doctors told her parents she would be lucky to 0:24:21.800 --> 0:24:25.160 live to see the age five. The anternet, like I said, 0:24:25.200 --> 0:24:30.399 she's amazing. She's strong and resilient, and she's been fighting 0:24:30.400 --> 0:24:33.320 with this her entire life. I know that she's told 0:24:33.320 --> 0:24:36.400 me that her like when she was younger, doctors told 0:24:36.440 --> 0:24:40.520 her mom that she wouldn't live in for thirty four now, 0:24:40.600 --> 0:24:46.280 so's a blessing. So I'm sure, with her strength will 0:24:46.320 --> 0:24:49.560 be living together for a very long time. She has 0:24:49.600 --> 0:24:53.280 had a remarkable improvement in her condition. Her pain is 0:24:54.119 --> 0:24:56.639 much better than what it used to be before. She 0:24:56.680 --> 0:25:00.160 has had very few severe pain crisis She has had 0:25:00.240 --> 0:25:03.000 very few, for at all, hospital admissions in recent years, 0:25:03.560 --> 0:25:06.479 and we do not see any further organ damage in 0:25:06.520 --> 0:25:10.560 her case. It's stressful because as a sickler, in the 0:25:10.640 --> 0:25:12.639 back of your mind, at least for me, every day 0:25:12.720 --> 0:25:15.000 when you wake up, you like, thank goodness, I'm not 0:25:15.119 --> 0:25:18.120 in pain, But you always had that in the back 0:25:18.200 --> 0:25:25.280