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COVID Recovered COVID-19 Patient Describes Agony Of Distorted Sense Of Smell

 June 10, 2021 at 1:06 PM PDT

Speaker 1: 00:00 One of the many mysteries surrounding COVID-19 is the peculiar side effect of patients losing their sense of taste and smell. And the medical field that's called a Nazia, uh, less publicized side effects that can follow when COVID-19 patients is when tastes and smells are distorted. That's called parasomnia. There's been relatively little research into these disorders, which until recently have been exceptionally rare and that's left many patients feeling confused, isolated, and hopeless. Julie Cardi wrote about her experience losing her sense of taste and smell in the San Diego union Tribune this week. And she joins me now. Julie, welcome. I thank you for having me also joining us is Dr. Carol Yan, a UCS researcher who studies these disorders and is involved in Julie's medical care. Dr. Yan, welcome to you. Thank you for having me, Julie, let's start with you. When did you first notice that things were not right with your sense of taste and smell? Describe what happened? Speaker 2: 01:00 Well, like many, um, I got COVID back in December, um, happened to be nine months pregnant and, um, was fortunate. Didn't have a, um, crazy reaction in terms of symptoms. It was like a one day baby cold. So I, you know, I was kind of best case scenario in terms of what I thought. Um, however, I did lose, um, complete sense of smell and that sense of smell never came back for about four months. Um, and then one day, April 17th, I was making dinner for my family and all of a sudden I just had this extreme distorted sense of smell. And then I tried to taste the food I was eating and it was just absolutely disgusting. And we've all heard about, I think, you know, original or initial smell and taste loss, but no one's ever talked about smell or taste distortion, which is what I was experiencing. Speaker 1: 01:55 Dr. Yan, how common is this side effect from COVID-19 and do we know why it happens? We Speaker 2: 02:01 Actually don't know how common it is. It seems to be incredibly prevalent though with COVID-19. Um, traditionally studies have shown that this altered sense of smell and taste, uh, is about 20 to 30% of people who experienced some sort of smell loss. So about a third have some type of altered sense of smell. Uh, it seems to be even more common though, with the people who have suffered from Michele loss. And COVID-19 typically, it's also shown to be a good prognostic sign, meaning we hope that these are the people who are actually on their way to recovery, but somehow on the way to recovery, their, um, smell nerves have gone a little bit off track and there may be misfiring. And that's why they're having this distorted sensation. Julie, Speaker 1: 02:49 How has this loss or distorted sense of taste and smell impacted your quality of life? Speaker 2: 02:56 Yeah, I mean, outside of the obvious, right? Needing feed ourselves for nutrition and feeding myself so that I can, um, keep up with my supply for breastfeeding it's it's had an emotional toll for sure. I, you don't realize how much smell and taste effect your life until this happens to you. I, like I mentioned, I have a newborn and I thought the worst part of getting COVID was not to have that smell, that new baby smell. Um, little did I know that my baby from one day to the next would smell like the only way I can honestly describe it is like hot or wet sewage. Um, it's my husband, his scent naturally gives that odor and just can't even like lay near him in the bed after he's brushed his teeth. So it's just, it's really, it's been an emotional toll for sure. Um, some days are better than others. Speaker 2: 03:50 Um, and I just try to honestly think about, you know, one, one moment at a time and not think too far out like, oh, I get invited to a wedding. Am I going to be able to attend that? Like, these are the things that, um, kind of run through your mind. And, you know, I was really looking forward to getting vaccinated and being able to rejoin society as we, you know, things start to open up again. And I can't even walk into a restaurant to grab some food to go for my children because the smells are just awful. It's just awful Speaker 1: 04:20 After Yan. Tell us about the research of right now into loss or distorted taste and smell. Are there any promising experimental treatments? How are we dealing with this? Speaker 2: 04:29 The good news is the medical community, um, have really come together internationally to kind of explore different options. The truth is that for smell loss of smell distortion, we just don't have great therapies. What we're looking at is new compounds, you know, things that might, um, improve the firing of these smell nerves. So, um, personally I am using one's own body's platelets and the plasma kind of the clear part of your red blood and that's purified into, uh, concentrated platelets called PRP. And we're actually injecting it into the area of the nose that has small fibers. And this is a, um, clinical trial that's being conducted alongside Stanford university, um, where the PI doctors are a Patel is. Uh, and so the two of us are hoping that something like this novel therapy, um, might, you know, bring new, um, treatments and potential for people like Julie and others. Julie, you write that you've Speaker 1: 05:27 Joined a Facebook group for other patients suffering from distorted taste and smell. Uh, tell us about that. Speaker 2: 05:34 It's been a really great, great group because you don't feel you're alone or crazy. I mean, when this first happened to me, I truly laid in bed the first night thinking that I was going insane or is this real? And it's really, it helped validate that I'm not crazy and that other people are experiencing this and it's been helped. It's helpful to navigate because many of us have very similar, um, aversions right now. Like for example, knowing to stay away from garlic, onion meats, um, those are consistent and let seems like constant triggers for all of us. And it's helped me navigate some things that are safe. Like for example, the, I, the ironic drink, Dr. Pepper, Dr. Pepper is a safe drink. So I I've never drank soda before. Um, but you can't have Pepsi. Cause if you have Pepsi, that is just disgusting. So this group has truly helped navigate some of the safe things together because as you can imagine, nobody wants to have trial and error with hot sewage. So, um, yeah, it's been, it's been really nice. And then, you know, sometimes it's, it's, it's not helpful in that you hear people that have been in this group that are going on 15, 16 months with no improvement. And so when you read their posts, you know, kind of makes your reality some, a little bit more scary, Speaker 1: 06:56 Dr. Yan, if anyone is listening right now, who's experiencing loss of taste or smell due to COVID-19, what advice would you give them? The Speaker 2: 07:04 Biggest thing is that realize you're not alone, uh, particularly if you're having these distortions, um, that this is a no on the kind of long hauler of COVID-19. And we really do encourage you to seek out medical treatment. And at least the advice of a trusted medical professionals are typically, um, the first line, um, physicians are EMT doctors like myself, um, and that there are clinical trials around the world being undergone. Um, so that is something they're interested in. We can partake in that we are learning more things about it. And then actually, um, one of the biggest thing is that, you know, to give, have some hope that for many, many people, that this is going to be a cured, um, disease or symptom, um, with time alone, even, but there are things that we've found that can help with it. And the last thing is that, um, it's so important for loss of smell to realize what you can't smell. Those are things like fire when you're cooking like carbon monoxide at home. And then when you do have a distorted smell, I tell people, um, and tastes, you know, if you can, absolutely. I slide into your safe foods, find that the things that you can bear because it's so important to stay as, um, nourished as possible. Speaker 1: 08:22 I've been speaking with Julie Cardi, a recovered COVID-19 patient, experiencing distorted taste and smell, and also Dr. Carol Yana, UC UCLA researcher who studies those disorders, Julie and Dr. GaN. Thank you so much for joining us. Speaker 2: 08:38 Thank you for having us in spreading awareness on Peraza. Thank you.

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The loss of taste and smell is now widely known as a telltale sign of COVID-19. But fewer people are aware of another potential lingering side effect: When scents and flavors become distorted.
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