The Reality of Immunotherapy: Progress, Setbacks, and Persistence with Sarah Danna
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Transcript Disclaimer:
This transcript was generated using AI software from the original podcast audio and may contain errors, omissions, or minor inaccuracies. It has been lightly edited for readability. Please refer to the full podcast episode for the most accurate representation of the conversation.
Sarah Danna 0:00
I had hesitations, but I was just really trying to hold onto the hope of reaching food allergy freedom one day. I just took it one step at a time. I just kind of went in thinking, you know, I'm going to try it, see what it's like, and didn't have too many expectations and didn't think too hard about what it would look like and the fears that would maybe come with it.
Speaker 0:24
Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence. Today's episode is part of this series exploring the many different paths families are taking when it comes to food allergy treatment and immunotherapy. Throughout the season. We've talked with physicians, researchers, and advocates about the science and clinical options that exist, and I think one of the most important pieces to the conversation is the people who are actually living these experiences in real time. What does treatment look like day to day? What progress is possible? What happens when the journey isn't perfectly straightforward? My guest today brings a perspective that many of you will recognize. Sarah Danna is the creator behind @sarahandspices where she shares her life navigating severe food allergies, life with MCAS, and her experience in the tolerance induction program or TIP. Many people have connected to her through her content because of her honest conversations about what it means to live life with complex allergic diseases. In this conversation, Sarah talks candidly about the progress that she has made through TIP, the setbacks she's encountered, and how the program has been accommodating and adapting her treatment in the context of an MCAS diagnosis. This episode gives us a couple windows into some things we haven't discussed yet, including what it looks like to pursue treatment when the path is definitely not linear and an adult pursuing immunotherapy treatment independently. I'm so grateful to Sarah for being here to share that with all of us.
Amanda Whitehouse, PhD 2:02
Sarah, thank you so much for joining me here on the Don't Feed The Fear Podcast. I'm excited to have you.
Sarah Danna 2:07
Thank you. I'm so excited to be here.
Amanda Whitehouse, PhD 2:09
Well, I have gotten to know you for a little while, but just got to meet you in person recently. We were talking about the importance of people hearing experiences from patients. We hear from the doctors here on the podcast of the different treatment options that are available, but people really want to hear from the people who have gone through it, and I think. It's probably that's part of why you have such a big following. So would you give us a little bit of background about yourself, your connection with food allergies, and then becoming a creator and an advocate in our space?
Sarah Danna 2:37
Yes, absolutely. So I'm Sarah. I share my life with food allergies and mast cell activation syndrome online so that no one feels as alone as I once did, and I started allergy treatment three years ago, so I started transitioning some of my content over to food allergy treatment and everything related to that.
Amanda Whitehouse, PhD 2:59
Tell us what allergy life looked like for you.
Sarah Danna 3:01
Mm-hmm. I was diagnosed with food allergies as a toddler, and I was diagnosed with mast cell this year, but I've had symptoms for I would say 11 years and just didn't really have a name, name for it. So in that sense it's been good to actually know what's going on instead of having like lots of random reactions and not really know why, because, you know, they're not as correlated to my food allergies. They're, now we know, correlated to MCAS but it's also been challenging for sure. It's just another thing to think about and, and add to the day-to-day.
Amanda Whitehouse, PhD 3:34
At what point did you decide to start sharing and like how did you decide, I'm just going to start making some content about this.
Sarah Danna 3:40
so growing up with food allergies was really challenging for me. I didn't really have anyone around me that had food allergies besides my mom and sister, so I think I often felt alone and. There was a point in my life around eighth grade freshman year of high school where I was having multiple reactions a week, not just to food, but to clothing, like the chemicals on it or environmental factors. And at that point I could only eat 13 foods safely. It kind of felt like my world was ending in a way just because all of a sudden I was having a lot more reactions and I was reacting to a lot more food and it really felt like I would. Never really live a full life with food allergies. And so once I got through that, I know, you know, I worked with my allergist, we lowered my histamine. I'm able to eat a lot more foods now, especially with allergy treatments. I really wanted to share. How I live a full life with food allergy so that other people don't feel alone. And I can also share the tips and tricks that helped me. And then through that, I've, you know, kind of just transitioned. In the beginning I shared a lot more about food allergies. Then I started sharing some more allergy treatment content. Now I share some MCAS content. It's really all of it, all of it I share now, but I feel like that's how it's kind of transitioned.
Amanda Whitehouse, PhD 4:57
Yeah. What's it like having so much of your information out there and having so many people following you?
Sarah Danna 5:03
I think there's a really big positive to it. I receive like a lot of comments and DMs like thanking me for sharing it, and it makes me feel so good because I know how it, how alone I once felt and like I wish I had someone that I could re relate to online when I was going through that. So it makes me feel so excited in that sense. But for sure there are negative. Side effect negative effects of sharing my life on social media, but I really just try to focus on the positives.
Amanda Whitehouse, PhD 5:30
Yeah, balance it out.
Sarah Danna 5:32
Mm-hmm.
Amanda Whitehouse, PhD 5:33
So at what point then did you learn about the tolerance induction program TIP, and how did you make that decision yourself as far as deciding to pursue something?
Sarah Danna 5:43
I found out about TIP really just scrolling on TikTok One night I saw this creator, I don't remember which crater it was, but she was responding to a comment asking why she's not doing the tolerance induction program. And she was explaining that it just wasn't a good fit for her. But it was really the first time I had heard of really any allergy treatment. So I looked up what it was online that night and they had like a box you could put your name and number and have them call you for to give you more information. And I just like submitted my info thinking, you know, I don't know if I'm going to do this, but it'd be great to know more info. The next day they called me and I set up an appointment a few weeks later for them to take my medical history. And then really a few months later, I launched into the program. It was a really quick decision because at that time, the age limit was 21 and I was 21, so I had to start before 22. So it was really just like, if I'm going to0 try it, I have to do it now. So I might as well just start.
Amanda Whitehouse, PhD 6:42
Yeah. Obviously, I don't expect you to give us the medical explanation, but as a patient, the two main options, would've been probably TIP and then some doctors were providing OIT that can be difficult to find too. Tell us what you learned about it and how you decided. This is the path that I'm going to go on and give a shot.
Sarah Danna 7:00
Mm-hmm. Yeah, so when I started TIP, I didn't know about OIT. I think it's for the best because it wasn't like a big decision of which option is right. Do I do it, do I not? It was really just. Do I try TIP or do I not try allergy treatment? And it really just on the phone, they were just explaining more about the program, the day to day, some of the statistics that just gave me a little bit of a better overall understanding of the program and, and what it would look like.
Amanda Whitehouse, PhD 7:25
Okay. How did you prepare? Once you had that consultation, what did you, based on what they told you it was going to be like, do to get yourself ready to make it a good experience?
Sarah Danna 7:36
I had hesitations, but I was just really trying to hold onto the hope of reaching food allergy freedom one day. And I took it one step at a time. The first appointment, they're just learning about your medical history. The second appointment they do a few tests and then that, that third appointment you launch into the program. And I think I just. Took it one step at a time. And then I think once I was in the program, I started finding other patients and parents of patients online and learning more from their experiences. But I think it was good. I just kind of went in thinking, you know, I'm going to try it, see what it's like, and didn't have too many like expectations and didn't think too hard about what it would look like and, and the fears that would maybe come with it.
Amanda Whitehouse, PhD 8:23
That's, that's a great sounding approach because I think that can be hard for a lot of us. Is that typically how you are with things or was there something different about this? Just like, I have to do something, I'm just going to go for it.
Sarah Danna 8:34
I think that's typically how I kind of approach everything, even just living with food allergies. Especially like my parents too. They have my, my mom's a nurse, so everything around food allergies. She's very calm about it and her approach is really like. We will handle what comes when it comes, but there's like no reason to worry about all the possibilities that could happen because we just don't know what it's going to look like. So I think that really carried into starting allergy treatment.
Amanda Whitehouse, PhD 9:02
That's helpful. Once you got started, for those who don't know, what did it look like? Walk us through what your typical like an appointment is, and then what the day to day is in between when you're not in the office doing an update.
Sarah Danna 9:13
Mm-hmm. So a typical appointment, it will really look different from person to person, but for me. It was typically like a two day appointment. So the first day I would be challenging whatever food I was building up the previous cycle, and so I would challenge the food and then exercise, and then they would take all my vitals. If everything looked good, then I would pass that challenge on. The second day was typically an in introduction or an escalation, so either introducing a new allergen or escalating a food, so doing a bigger up dose than I would've done at home.
Amanda Whitehouse, PhD 9:48
Okay. And then at home dosing. Can you tell people what that is like then?
Sarah Danna 9:52
Yeah. So again, day to day is going to look so different patient to patient, but for me it started with sublingual immunotherapy. So if your environmental allergies are related to your food allergies. They'll typically have you do slit and it's basically just a liquid spray that contains a bunch of your environmental allergies. You spray it in your morning, you spray it under your tongue in the morning, hold it for two minutes, and then you can't eat or drink after for 10 minutes. So super simple to do.
And then I had my morning maintenance foods, and these are foods that either I'm done dosing or I'm pausing dosing while I dose other foods. And I could have like up to 10 foods. I had a lot it, it would just build and build and then at some point you would do blood work and hopefully those foods would go down to maybe once a week or three times a week instead of every single morning. And then four hours after that, and it had to be after 12:00 PM I would do my treatment foods.
So these are micro doses of my allergens. I would be dosing about one to four allergens in a cycle, and my cycles were about like six to 12 weeks long. It really just depended where I was in treatment. And then each week those doses go up and then those doses just have to be spaced 15 minutes apart. And then after the last dose, there's an hour rest period where you can't raise your heart rate. So no like exercise or hot showers or doing anything like intense video games or really like anything of that sort that's going to raise her heart rate.
Amanda Whitehouse, PhD 11:27
Okay, so, we've done OIT in my house, so OIT is my reference point. I'm not necessarily trying to compare, but, so we see people online doing the exercise challenge in the office, but at home it's the same rest period after dosing, not exercising. I just wanted to clarify that, because I think some people thought there's no rest period with TIP, but that's not necessarily the case on home dosing.
Sarah Danna 11:47
Yeah, there's only a rest period after treatment foods. So once those foods, if they go into maintenance, there's no rest period after
Amanda Whitehouse, PhD 11:55
Gotcha.
Sarah Danna 11:56
And then once you like pass your final challenge, you reach tolerance for a food. There's no more rest period after that. I've also heard sometimes in OIT, like after you technically graduate, there's still that rest period, but with TIP there's typically not. So a few differences, but I think it also just depend person to person.
Amanda Whitehouse, PhD 12:15
The more I learn, the more they're shifting because I think that was always the case with OIT and now, like at least our doctor, and this is not everyone, once we reach maintenance. Does an exercise challenge, and once you pass the exercise challenge, then the rest period is gone. So yeah, it's, it's interesting to try to share all this with everybody, but basically the answer is always, but it depends on you and your doctor, right? Everyone is so different. So you had a lot of foods. How many have you actually done TIP for and how many did you earn? Like some of them, it sounds like you earned back once you got your histamine down and you weren't so reactive. Is that correct?
Sarah Danna 12:47
Mm-hmm. So in TIP, I reach Tolerance to nine Foods, and then I still allergic to five foods.
Amanda Whitehouse, PhD 12:55
Okay, so you mentioned to me that you're going to be undergoing something else for those, and if you're comfortable, I'd love for you to share about that too.
Sarah Danna 13:05
Yeah, so my case was a little bit different just because I have MCAS, which made the process a little bit more challenging. So I graduated from TIP, I reached for Mission for nine of those foods, so I can eat them freely with a re, without a reaction, and then. My providers and I decided to stop TIP for five of my allergens because there's a big MCAS so wheat, rye, barley, oat, and dairy. It was a little bit challenging to dose through TIP just because I was having a lot of MCAS reactions, which just made the process a lot more challenging.
The plan moving forward is I'm working with doctors at T-P-I-R-C, which is a, one of their related clinics, and we're just going to take a very, like an MCAS focused approach to TIP. So it's going to be, I think, very similar. I'm trying some MCAS medications to also help the process, and it should be a little bit slower than TIP and not treating as many foods at as once. So hoping that all goes smoothly, but I feel like it's going to be the same thing of kind of figuring it out as it's, you know, as we go.
Amanda Whitehouse, PhD 14:10
So were things not going well for those five allergens and that's why you're treating those ones differently than the ones you reached maintenance on.
Sarah Danna 14:23
Yes, I was just having a lot of setbacks, mild reactions like stomach pain and itchiness, skin redness which. We now know has a really big MCAS component. When I started allergy treatment, I didn't know I had MCAS. was diagnosed about two years into allergy treatment by one of my providers because they felt like, you know, on my allergy numbers and the treatment plan, I shouldn't be reacting to those foods. So it made sense once I was diagnosed with MCAS that, you know, there's that component that's playing into it.
Amanda Whitehouse, PhD 14:53
One of the things that you touched on, but people are always concerned when doing any, choosing any kind of treatment is reactions. You mentioned a little bit of some of those side effects, but is there any more that you want to share on if it was easy or if, if it was difficult to kind of manage some of those things?
Sarah Danna 15:09
Mm-hmm. Yeah, so I never had any severe reactions to treatment. I only had those like mild reactions that I was talking about, and I didn't typically take any medication for them. And then I only had. I think one or two other reactions where I took like Benadryl or Benadryl cream or things like that. So it was only mild reactions for me, which was really great. But there is always the possibility of other reactions. I've seen stories online and heard other things, but. For me, it was really just trying to trust that the providers have my best interest in mind. I'm in the best place to have a reaction when I'm at the clinic because there's so many doctors around. And then I'm also prepped at home. We have access to a twenty four seven on-call provider and we have all the meds in our scenario kits. So like I'm prepped to handle it if that happens on the rare chance. But really just trusting the process and hoping it will go well.
Amanda Whitehouse, PhD 16:05
Okay. Yeah, it sounds like you feel really comfortable and confident about it.
Sarah Danna 16:08
Mm-hmm.
Amanda Whitehouse, PhD 16:08
So could you talk a little bit about the day to day, the routines the habits, kind of building your day around the dosing.
Sarah Danna 16:15
So I talked a lot about the day to day and it can seem like a lot at first, but. I kind of found my rhythm, and usually I would like meal prep, like the maintenance foods. Like I was saying, I could have like 10 different maintenance foods. So instead of like taking each one and measuring them every morning, I would just usually spend a day and prep all the maintenance for a month and have them like already in cups and then the treatment foods as well. For the most part, the lab will create them if they're micro doses, but once you start to get to like an eighth of a teaspoon or a quarter of a teaspoon, you measure those yourself, and then the milks you have to denature and measure those.
So there's some treatment foods that you have to do, and I would, again, meal prep those. And I actually forgot to mention, there's also recommended foods that you have to eat three to five times per week. So I would usually meal prep a meal with some of those so that I didn't have to think as much of getting all of those in on top of that.
Amanda Whitehouse, PhD 17:11
What are those foods?
Sarah Danna 17:12
Foods that were related to my allergens. So for me it was like apples, pears, chickpeas, lentils, cashews, things along, along those sorts.
Amanda Whitehouse, PhD 17:23
It sounds like similar to your allergens that you aren't necessarily allergic to, but they just want to also have in the diet. So your body's used to them alongside of the allergens. Is that kind of the idea?
Sarah Danna 17:34
From my understanding, it's just they, they tried to have you eat a lot of foods related to your allergens to start building that tolerance before and during actually dosing
Amanda Whitehouse, PhD 17:47
Gotcha. Okay. Because you hear people talk about how chickpeas or lentils are in the same family as a peanut, so it's kind of like prepping the body in a sense, but with similar things. Okay. What would you tell people who are considering it as far as how doable that is? I mean, it does sound like there's some work on your end. You came up with a plan. Was it problematic? Was it pretty easy once you got used to it?
Sarah Danna 18:11
Yeah, I think it really just depends on the individual person. I think for me, I'm an adult in treatment, so it's going to look a lot different than if you're a child in treatment, because for me, I was prepping, administering, monitoring all of the doses by myself. Whereas a child in TIP, all they have to do is eat the food and their parents do the rest. But if you're a child, your child might not want to eat all these different foods. So then there's that challenge, whereas an adult, I can eat it and then eat something else to mask the flavor. It's not that big of a deal.
Amanda Whitehouse, PhD 18:42
Right.
Sarah Danna 18:43
There's just different challenges that are going to come with every different scenario. But for me, I just kind of took it, you know, one step at a time and I'm made those routines and found things that worked for me.
Amanda Whitehouse, PhD 18:54
Okay, great. What were some of the best parts? What were the highlights of the experience? I mean, I know you're not totally done yet, but so far.
Sarah Danna 19:01
Yeah, I think some of the best parts was finally clearing peanuts. I had gone anaphylactic to peanut before treatment, so it was a really big milestone for me. Especially now I can eat them freely without a reaction and I don't, I honestly don't love peanuts unless they're like, have a ton of sugar in it, like Skippy peanut butter or something along that sort. But I think the best part is that I don't have to worry about having a reaction if peanut is in something, and then also not having to worry, like if I'm on the plane and someone eats peanuts or if I go to a baseball game and there's peanuts all over the floors, stuff like that. I think it's just like level of a lot less anxiety around that.
Amanda Whitehouse, PhD 19:43
Yeah, which I think is probably a big motivator for all of us who are seeking this. I mean, obviously the safety is first, but what the safety gives us is peace of mind and comfort and the ability to relax and enjoy and socialize and all the things we want to do. Right.
Sarah Danna 19:56
Mm-hmm. For sure.
Amanda Whitehouse, PhD 19:58
Could you talk about how life is starting to feel different because of that?
Sarah Danna 20:02
Mm-hmm. Life is starting to feel a lot different and I'm like not even completely done with allergy treatment. And I think that's like the best part. And I hear a lot of people talk about this online who are in, you know, allergy treatment as well is like, once you start, you know, you clear cross contact that opens up a world and then you start, you know, food by food, just getting one food back can completely open up new doors. So I think that's a really great part about allergy treatment and being able to have like those milestones along the way. Help, because when you're looking at, you know, my plan was three years long, so at the beginning I'm like, three years feels forever. But you know, there were really big milestones along the way.
Amanda Whitehouse, PhD 20:42
Yeah. Well that's exciting and encouraging to hear. One of the things that I saw you post about that I loved so much, and I would love for you to talk about it here. You posted about letting people help you, you know, something along the lines of like, I'm a grownup. I can go to my appointment by myself. But, talk about that process of realizing you needed to let the people who cared about you help you.
Sarah Danna 21:01
I started treatment when I was in college and I went to college across the country from my family. So I was really doing a lot of the day-to-day of treatment alone. And for the first year of treatment, I was going to all the appointments alone too. And like you mentioned, I just felt like, you know, I was going to like a pediatric allergist. It felt weird bringing a parent along. I thought people would judge me for needing that support. Once I started introducing Peanut, I invited my friend to come with me and the appointment was like so much different because I was a lot less anxious. It was so great to have her there to like joke around and lighten the mood and. Just have someone with me so I didn't feel so alone.
I think, like growing up with food allergies, I've always been told that, you know, I'm really mature, I'm very self-sufficient, I can advocate for myself. And I felt like, oh, I have to do that. I can't, you know, lean on other people for support. So it was a, a really big thing for me. After that appointment, I really didn't go to any appointments alone after that, I would either invite my friend or my mom to come with me, and that was just really helpful because. Allergy treatment can be really challenging. And having that support really makes a difference.
Amanda Whitehouse, PhD 22:14
Absolutely. If you could go back in time, maybe that's one of the things, but what would you tell yourself now, you know, three years back at the beginning of that treatment?
Sarah Danna 22:24
Definitely lean on some support. And then. I think it would've been really helpful for me to, going into treatment, I thought it was going to be like a super easy, straightforward plan. And I think for a lot of people that might be the case, but for me, it wasn't as an adult in treatment. And then I also have MCAS, which made the, you know, process a little bit harder. It was kind of hard to come to terms in the middle of treatment, realizing that, you know, my plan isn't going to be exactly as we thought. I think it would've been good to maybe prep myself in the beginning before I launched into treatment of, of having that expectation so I didn't have to kind of like rewrite that mid treatment plan.
Amanda Whitehouse, PhD 23:03
Right and feel disappointed or discouraged. But also that's encouraging because I think there are a lot of people out there who think if I have a more complicated case or you know, if I have tons of allergens or if I have MCAS or something else along with the food allergies, I can't do it. But obviously that's not necessarily the case, it just might look different.
Sarah Danna 23:21
Mm-hmm. Yeah. And one thing I really found like throughout the process is that the providers at TIP, they really want to see your success and they will really do anything they have to do to get you there. And so I think also I found a lot of like. in that of like, you know, they have my best interest in mind and they will pretty much do anything they need to do to get me there. They'll rewrite my plan, we can go slower, we can change things up. Because in the end they just want, they want to see me reach food allergy freedom.
Amanda Whitehouse, PhD 23:51
Right. Right. Well, that's exciting to hear. And know that that's the process. Not like just Oh, too bad, you're done. It's not working. Not specific to treatment, but just in general with being so visible online, and may be with your TIP progress, does it feel like ever, like pressure or does it feel difficult being so visible and having people watch you go through, obviously successes, but also challenging things.
Sarah Danna 24:16
Mm-hmm. I think there's like two sides of it. I think for the most part, it's really positive. I receive like a lot of comments saying they either like started allergy treatment because they saw my page, or they feel less alone in allergy treatment because of that. And that's really the reason I do it. And I think in reverse hearing, that makes me feel less alone too. But they'll always be, you know, I've gotten negative comments and there's times where I'm like, maybe I don't feel like being so open and it's definitely interesting to navigate. I think at the beginning of sharing my life online, I was super open and I think over time I've decided, you know, what I want to be super open about and what maybe I want to keep private because I deserve to have like some of that privacy in my life too.
Amanda Whitehouse, PhD 25:00
Absolutely. Thank you for saying that. And I, I'm sure you've tried to say that before, and I know a lot of you young influencers say that, but it's good for people to hear. How do you balance it? I'm gonna share this, I'm gonna, maybe keep these things private and you know, staying positive and dealing with the negative stuff. How do you balance all that out?
Sarah Danna 25:18
I, I think I'm like still honestly learning it. I just take it kinda one step at a time. I think, like I said, I was very open before. I've kind of learned what I want to share, what I don't wanna share, I think there's. A great part of being vulnerable and sharing things because other people can relate and then I can relate to them. So it like helps both ways. But in the end, just thinking what's the best for me right now and, and what I wanna share and what I don't wanna share.
Amanda Whitehouse, PhD 25:45
Yeah.
Sarah Danna 25:46
but just kind of take it one step at a time.
Amanda Whitehouse, PhD 25:49
Yeah. Which sounds like your approach to everything. I think that's really helpful to hear because a lot of us don't operate that way, but it's helpful to hear someone who does and, and kind of adopt that mindset ourselves.
Sarah Danna 25:59
Mm-hmm.
Amanda Whitehouse, PhD 25:59
There are different things at each stage of life that I think people are concerned with. I think people really appreciate hearing from you because you're a young adult. You're in that phase of life where you're independent from your parents' care and, and you're doing it right, like you said, I'm having a great life even with my allergies. Can you talk about what you want people to know about that?
Sarah Danna 26:17
Yeah, I think one thing my parents did really well as I was growing up with food allergies is they just took it like one step at a time. So like for example, eating out with food allergies, at first I would just watch my parents talk to the chef or the waiter and tell them about my food allergies and listen to what questions they were asking. And then when I got a little older, they had me talk to the waiter or the chef. And then that way, once I was old enough to be on my own, be in college across the country from them, I was able to do that without them. And so I think just taking it step by step by step. Once I was an adult with food allergies, I had all those tools and, and the ways to navigate it on my own.
Amanda Whitehouse, PhD 26:57
Yeah, like that natural progression of each step, which the theme I'm hearing from you is and in your family. We deal with the one that we're at, not worry about the one that's five steps down the road. People can't always stop their brains from just, you know, obviously that's why I have a job. 'cause it's, it's really hard for people, but it does it just feel natural for you to operate that way?
Sarah Danna 27:18
Yeah, I think it just feels really natural. With my mom being like a nurse practitioner and I think my parents' like perspective in general was they were really calm about my food allergies. I think sometimes I'll meet food allergy parents and there's nothing wrong with this. Like you do the best you can with the information you have, but they'll be like very anxious around the food allergies and I think that can sometimes make the kid anxious as well. I think overall my parents were really calm if I had an allergic reaction, or I was having a struggle with food allergies and so I was calm as well and I think that's just given me that perspective to kinda live my life with, of, you know, I'll, I'll get through it. And I have the tools to.
Amanda Whitehouse, PhD 28:00
Well, thank you for sharing that. I think that's helpful for people to hear, especially for us parents looking at you as an adult now, sharing what was helpful. We need that reminder a lot. So cheers to your parents too, for doing such an awesome job.
Sarah Danna 28:13
Yeah,
Amanda Whitehouse, PhD 28:14
So. So now that you have gone through TIP, you have some things ahead, but obviously you said life is really different now. So what are your next goals, either within your allergy advocacy or, or just for you as an individual?
Sarah Danna 28:28
Well, I think for sure I'm looking forward to the MCAS focus approach to allergy treatment. I have my first appointment with that in December, which is exciting. But overall I'm just excited to share more about food allergies, more living with MCAS. I think I've been slowly transitioning into sharing more about that, of that day to day. And really just connecting with amazing people online.
Amanda Whitehouse, PhD 28:52
Well, I know everybody's really appreciating everything that you are sharing, so thank you for doing it because like I said, the patient perspective is so helpful. And I think even more, you know, people connect even more with accounts like yours and some of the other young people who are sharing more that. More than some of the doctors or other professionals. It's helpful to hear.
Sarah Danna 29:09
Mm-hmm.
Amanda Whitehouse, PhD 29:09
So what message do you want to share with other people who are considering any form of food immunotherapy? What would you want them to know before they dive in?
Sarah Danna 29:17
Mm-hmm. I think the biggest thing is people have to do what's best for them. There's now lots of allergy treatment options. I did TIP, but that doesn't mean it's going to be the best option for everyone. And then for some people, you know, allergy treatment might not be the best for them. Either so you can still live a really full life with food allergies, and I really try to share that with my content because I do share so much about treatment. I don't want to make it seem like you have to do treatment to live a full life. I have no doubt that if I didn't do TIP that I would still live really freely and just like one perspective I make a lot of my decisions with is I always try to think about how will my quality of life change either doing treatment or not doing treatment or, you know, whatever the decision is and the quality of life might not change, so then maybe it's not the right option for you. And so I try to like really look and weigh the options in that way.
Amanda Whitehouse, PhD 30:14
That's a great point. How is this actually going to change and affect my life, not just is this the thing I'm expected to do or should do?
Sarah Danna 30:21
Mm-hmm.
Amanda Whitehouse, PhD 30:22
Yeah.
Sarah Danna 30:22
Or like feel pressured to do. I get some comments from allergy parents and they're trying to decide whether or not allergy treatment is a good option for their kids. And I always say like, I'm not sure because every single person is different with food allergies and your kid might Be absolutely thriving, even with food allergies and allergy treatment wouldn't make a big difference. So then why go through with it? You really just have to make that decision for yourself.
Amanda Whitehouse, PhD 30:47
Absolutely. Thank you for saying that. The reason I'm doing all this is because it's exciting that there are all these options, but it's also really stressful to try to sift through and make a decision, and that pressure that you're describing is a big part of it. So it's helpful to be reminded.
Sarah Danna 31:00
Mm-hmm.
Amanda Whitehouse, PhD 31:01
So probably a lot of my audience already is familiar with you and is following you, but just in case they're not, can you tell the listeners how they can follow your journey and everything that you're sharing?
Sarah Danna 31:11
Mm-hmm. Yeah, so you can find me @sarahand spices on TikTok and Instagram.
Amanda Whitehouse, PhD 31:17
Perfect. And I will put the links in the show notes too so people can find it.
Sarah Danna 31:21
Great. Thank you so much for having me.
Amanda Whitehouse, PhD 31:23
Of course. Thank you for taking the time to chat.
Amanda Whitehouse, PhD 31:25
Here are three action steps you can take following today's episode.
First, go follow Sarah. You can find her on TikTok and Instagram @sarahandspices where she talks about life with food allergies, MCAS, and her experience at TIP my favorite content is her amazing baking skills that she has developed to help her navigate food allergy life without missing out. And if you're not already following her, I know that you'll enjoy it too.
Second, if you want to learn more about TIP the Tolerance Induction Program, you can visit the Food Allergy Institute's website at foodallergyinstitute.com. And their social media handle is the same.
And third, if you're trying to make sense of the many different options that are available today, you can check out the workbook that I wrote called From Fear to Freedom. It was written specifically to help patients and families make these decisions, and then navigate treatments with their social and emotional health in mind. You can find that anywhere you buy your books. I'd encourage you to look on bookshop.org to support local bookstores and the links for everything talked about here will be in the show notes.
If you're finding this series helpful, please consider sharing it with someone else who might feel the same way, or leaving a rating or a review to help me grow the podcast. Thank you for listening, and I will talk to you again next week.
The content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.