Marissa: Welcome to the 12 Months, 12 Journeys, 12 Lessons podcast. This show features monthly a different health condition or cause. The goal of the show is to learn from and uplift our guest. My name is Marissa Christina from Abledis.com.
Today’s podcast is featuring Sarah Mills. Sarah is an artsy person. She likes crafts such as knitting, cross stitching and card making. Sarah recently graduated with a Bachelor of Arts in Humanities with German and Music, managing to combine both her love for music and for the German language. She is also a self-confessed and proud geek with an interest in computers, gadgets and most things considered geeky. Sarah is 30 years old, born, raised and is living in Colchester, United Kingdom.
I’m happy to welcome to the show Sarah. Hello, Sarah.
Marissa: Hello. I’m so proud to be part of this a month’s 12-12-12 project. Sarah, let’s not hesitate. Let’s just dive right in. I’d like you to take me back to the age of 22 when you say that you allergies spiraled out of control. Can you describe what that moment of time was like?
Sarah: Hell, pretty much, if I had to summarize it. Although I had been used to allergies all my life up until that point I was reacting to every single thing that I was putting into my mouth. I was down to about 10-15 foods and I was still reacting and I was losing weight. I went down to something crazy like six stone, ten pounds. That’s crazy at my height. I’m mighty small, really.
My asthma was out of control. I couldn’t breathe. I had eczema. My face was red, it was puffy, it was itchy, it was weepy, it was sore, it was so uncomfortable and I was reacting to all sorts. I couldn’t see people if they had washed their clothes in the wrong detergent. I couldn’t see people if they’d wash in the wrong shampoo, or the wrong shower gel or something like that; basically, if it’s got perfumes in it. I was just in my home. I couldn’t go out without reacting and I was reacting in my home as well. So yeah, hell.
Marissa: You mentioned something about you had allergies for a long time. Had you suffered with allergies and sensitivity since childhood?
Sarah: Since birth. I’ve had eczema since I was probably a few months old – I think about three months old. My mom had suspected asthma right from birth and that finally got diagnosed when I was about five years old.
I certainly had food sensitivities to certain things like artificial colorings, flavorings, preservatives – all those things – and oranges and bananas. Obviously this is when I’ve been weaned and I’m eating proper food. It was bringing my eczema up. I was even hyperactive as a kid with oranges and colorings. Honestly, I was dancing on the rooftops…and not in a good way.
Marissa: Let’s take it back a bit, because before we get too deep into your story there is this tendency for the term “allergy” to be thrown about with no sense of urgency. I believe that’s partially due to just a lack of understanding. Can you explain to the listeners what is actually happening to the body when it’s exposed to allergens?
Sarah: Basically, when an allergen comes into the body, then the immune system is basically saying, “Alert! Alert! We’ve got to fight this. This is something really bad in our system.” The average person, this wouldn’t happen to. It’s seeing the wrong things as an invader into the body.
When the immune system is activated, the person would usually have symptoms of a cold. For an allergy, it will cause sneezing and eyes itching. It can cause stomach upsets, stomach pains, a load of bowel issues. It can do anything to the body, basically. It’s just fighting and trying to get rid of this allergen, which it shouldn’t be doing. It’s an inappropriate response.
Marissa: Let’s list off some substances that can turn into allergens. I have on my list here pet dander, tree and grass pollen, molds, certain foods, insect venom, dust mites. I would ask you, in your experience to these different types of exposures, do allergens carry their own set of symptoms or are they similar symptoms across the board regardless of the different type of allergen?
Sarah: I find that different things cause different symptoms for me. Foods will generally cause stomach reaction for me. Even on that basis, it’s different. Different foods will do different things.
For instance, back when I was 22, rice and potato, as soon as I ate it, I got pain right in my throat. You could feel the food going down but it wasn’t just the food going down; it was like razors. It was so painful. Then it would go into the stomach and hurt in the stomach and then it would just go right through the system. It will cause all lots of nasties really.
Fruits would bring up my eczema. Pollens would bring up my eczema and affect my hay fever. You get something called pseudo cross reactions when something is related to another item. It’s quite possible that a fruit would be related to pollen and therefore the reaction would be similar, if you see what I mean. There are differences.
Sometimes it depends on which bit the allergen is targeting. If you’re going outside and someone cut the grass, it’s going to immediately hit your face, hit your eyes, hit your nose and that’s where it would affect on me. So it depends on where it hits as well.
Marissa: I hate to take you back to a bad memory, but can you share with us the worst allergic reaction you’ve had to date? What triggered it and what was the reaction?
Sarah: If I’m allowed two moments, I can’t specifically say exactly when, but I can say the scenario. One of the times has been when it’s so painful to eat…so painful to eat that it is less painful to not eat. It’s less painful to be starving. That is pretty horrendous and very scary, quite frankly.
The other scenario with the reactions was when my face was so swelled, so puffy and it’s affecting my breathing; it’s affecting your face as swell. It’s what people see and you just want to hide away. You wouldn’t hide away anyway because going out is causing it. Even if you go out, it’s just going to get worse. That was probably one of the worst moments on that side of things – the frustration and not being able to breathe.
I think those are the two real times that have been the most distressing really.
Marissa: At the height of your food allergies I had saw somewhere that you dropped down to 42 kilograms, which I think is equivalent to 92 pounds. Was there an attempt made by the doctors to stabilize your weight?
Sarah: Sort of. I’m talking National Health Service now. They sent me to a dietician. I was put on a food supplement drink – a dairy-free one because they knew I couldn’t tolerate dairy at this point. But it wasn’t really doing anything.
The dietician would basically say, “I can’t really do anything else because you need to see the allergy specialist and you need that advice.” I saw an allergy specialist in Manchester and we did some tests and they did find some IGE responses.
Marissa: IGE response, meaning antibodies?
Sarah: Meaning the antibodies, yes. IGE is the antibody responsible for what they call true allergy which is type 1 allergy, and that’s the reaction that you get within two hours of contact with the allergen. It’s usually immediate. That would encompass your anaphylaxis and asthma reactions and immediate swelling, etc. They did the tests.
They didn’t find anything for dairy. They wanted to do what they call the double blind placebo, or the double blind challenge. This is the procedure for dairy. I just said to them, “Well, why? Why do you want to do that?” because I’ve already ruled it out myself. I only want to see what’s going on, what happens.
I said, “You won’t see anything because I get a migraine 24-48 hours, even sometimes up to 72 later. When we’re talking about an intolerance, which is an IGE response, it’s the timeframe you’re talking about. Anything from between 24-72 hours would be an intolerance.” I’m just saying, “Well, you’re not going to see a migraine. I’m not going to change to being purple with yellow spots, so you won’t see anything. You’re just going to go by what I’m telling you and I can tell you that already.”
He just came back at me and said, “But dairy can’t cause migraines. Dairy doesn’t cause migraines.”
With regards to my chemical sensitivities to perfume, CBT (cognitive behavioral therapy) basically it’s all in my head.
Marissa: What sort of leads me to what other life adjustments have you been forced to make to manage your allergies?
Sarah: Pretty much everything. I apply a rotation diet so that I’m not repeating foods on consecutive days, so that my body gets some rest.
I don’t know if the listeners can hear in the background, there’s a fan sound. That’s a sound of a HEPA filter. I have two of them in my flat. That’s to take away things like pollen, dust, even chemicals to a certain extent although I don’t have chemicals in this house. They’re banned.
That means no household cleaning products, or chemically based. No cleaning products for me are chemically based. I don’t have air fresheners, nothing like that. I had to change absolutely everything.
Bedding – I have to have dust mite protection on my mattress. I have to make sure the pillows are dust mite-proof and the duvet. I can’t have anything feather in the house. Everything is a complete life change.
Marissa: Let’s head back to this rotation diet. What is it and what’s the purpose?
Sarah: A rotation diet is a program by which you allocate days of food. For instance, currently on my diet day one I would have either beef or sardines. We’ll do it for dinner because it’s the easiest. I’ll either have beef or sardines for dinner and then I will have sweet with it, I will have peas, and I will have green beans. That’s my dinner for that day.
That means on day two, the next day, I can’t have anything from that meal on that day on any meal. So day two would then be chicken or mackerel, rice, sweet corn, and sweet peppers for dinner. It’s different food on different days.
The ideal diet to do is a four-day rotation because it gives your body three days where you’re not eating a certain substance and therefore you’re not overloading your immune system because when you’ve got severe allergies your immune system is so delicate, you overload it and you can then actually make yourself allergic to that item. You get this rest and then you have again. Similar of overloading myself, I also have to make sure that I don’t have too much of a certain thing in a certain sitting, because if I have too much then I will get problems as well.
I like to use the analogy of it’s like filling a bucket. A bucket will only take so much water. If you fill the bucket too much, the bucket will over spill and you get problems. It’s just the same with an allergy sufferer.
Marissa: With such strict food restrictions, do you dine out or what is dining out like?
Sarah: I don’t dine out very often. Locally, there’s one county pub that I trust with my food because they’ve got experience of having to cater for gluten-free anyway because of the landlord. But also they realized that people were going to them because they were catering for gluten-free. I come along and I’m completely changing the picture.
They’ve got my entire food list. I will e-mail them if anything changes, and if there’s something on the menu that I like or that I want, they will prepare it in a way that is okay for me. They know that they can’t use utensils that they use for regular cooking for an allergy person. They’ve got to keep those utensils separate. They know they’ve got to keep the food prep area separate. Everything is controlled, obviously as much as it can be, but it’s so controlled that I trust them with what they’ve been giving me.
That’s one place locally. But generally, I don’t eat out. If I do find myself that I’m out and I’m hungry and I need something to eat, it’s a baked potato because that’s quite honestly the only thing I could eat. I can’t trust things like chips because of how they might be cooked. Some chips are coated in wheat flour. I’m hideously allergic to wheat, so it’s something I can’t risk. I know I’m all right with the potato.
Marissa: Good grief. Let me say this to the listener. For the last five days I’ve been attempting to do this food rotation diet, which Sarah had a look at and she approved, even though she let me slide on some two-day rotations. I want to say that even the pre-packaged and pre-prepared foods, there’s sort of a panic there because, for example, I mentioned in the blog post that my fiancé offered me some salsa. Now I had to look at the list that Sarah gave me of her list and I had to make an assessment. Well, it’s pre-packaged; I’m not really sure. Could chili powder be in there, other substances? What is it really like for you when you see pre-packaged and prepared foods? Do you even attempt it or you just avoid it at all cost?
Sarah: Pretty much avoid it. There used to be a certain amount of dedicated gluten-free and freeform items that I could [19:31 inaudible].
However, these supermarkets like to improve their recipes. For instance, there was one well-known supermarket in the UK that did a gluten-free and yeast-free pizza base, which I could get because I tried not to have it too much. I try not to have too much pre-packaged food anyway, but it was something that if I was really exhausted I could just create this pizza and it would be a nice quick easy meal.
Then they snuck yeast in, and the same thing [20:15 inaudible]. Even a lot of the freeform foods I generally can’t touch anyway because there’s always something in there that, although it will be all right for regular allergy sufferer, for severe allergy sufferer where your limit is so much, there’s always going to be something. Most of the time it’s carrots, which I can’t eat. It’s pretty much all the way.
Marissa: Yikes. It’s understandable that when you’re living with severe allergies, those in your close circle have to make adjustments. For example, maybe your mom or sisters can’t come over wearing a scented perfume or they have to be careful about washing their clothes in certain laundry detergents. Talk about your personal support group and how they’ve responded, or a lack of response. How’s that been?
Sarah: I have been very, very lucky that my immediate family unit have been fantastic. As soon as they knew there was a problem and knew what to do, as long as I told them what needed to happen, they acted on it. When I said to them, “I’m really sorry, but can you change? You’ve got to stop using your regular detergent. Can you please use X, Y or Z instead, mom?”
She loves to do hair up and she’ll use hairspray. If she’s spraying the hairspray, I still can’t be around it. But she will use a perfume-free hairspray. She used to spray it and say, “But I used it hours ago,” and I’d still smell the perfume on it. She’s altered it in that way.
My sister and my family all know that they’re not to wear perfumes or aftershave or highly-scented deodorants, certainly nothing that’s unnatural. For instance, as well my best friend came to stay over the summer and he would use a regular deodorant, obviously. I just said to him, “I’m really sorry. When you come here, I’ll provide it because it’s something that I’m asking you to do, but can use the shower gels, the hair shampoo and the deodorant that I provide to you so that I’m not reacting?” And it was fine. I’m very, very lucky that I’ve got this great support circle. Other friends that I see on occasion, they also are absolutely fantastic.
Marissa: That’s awesome.
Sarah: I’m very, very lucky. Not everyone is this lucky.
Marissa: I can imagine. Sarah, can allergies be cured?
Marissa: Since we know there’s no cure for allergies, we know in 2005 you begin management of those allergies with a low dose of immunotherapy treatment. What is immunotherapy?
Sarah: Immunotherapy is a treatment by which it’s helping the immune system. Low dose immunotherapy, which is [23:53 inaudible] to be able to tell you about it specifically. Low dose immunotherapy is a system by which you inject yourself daily with a certain dilution of a cocktail of allergens.
Each vaccine is tailor made to the patient and they have to test you regularly, usually every three months, for the appropriate dilution that basically neutralizes the responses in your body. In very simple terms, it’s telling the nervous system that this is an okay substance. It’s got to be at the level that the body can take. If it’s too much, then the body will react; if it’s too little, the body will still react. It won’t recognize it as, “Oh, this is an okay substance. We don’t have to react to it.” It’s got to be absolutely spot on.
It’s going back to that bucket. You’ve got to get it smack bang full – not overflowing, not shy at the top. Because of the way the immune system works and how allergy patients’ bodies work, that bucket can change in size per allergen. That’s why you have to get the testing done regularly. But it’s just basically saying to the body, “Don’t react to it because this is fine.”
Marissa: When you started doing this treatment would you say that the treatment was successful?
Sarah: Yeah. It was. It’s not an overnight thing. I happened very, very slowly. I also built up the number of allergens that I was vaccinated for quite slowly as well. The first things were what we call the inhalants. It’s the pollens, the dust, dust mite, the cat, the dog, a certain amount of chemicals. They were pretty much done first, and then the foods that I was reacting to the worst were then done. That was all built up slowly.
I suppose I started to notice a difference after about a month or two. As I said, I’m still getting responses. It wasn’t all like, “Oh yeah, it’s fantastic, wonderful. We’re all cured.” It was very much a very slow process and it took me about three years to really get from reacting horrendously to stable.
Marissa: And what did your life looks like then?
Sarah: Three years afterwards?
Marissa: Yeah. Did you feel better? Were you able to participate more on a regular quality of life?
Sarah: Yeah. My eczema had gone. I looked, for all intents and purposes, “normal”. I had put weight on. I’ve gone to eight stone – don’t ask me what that is in kilograms – but I had gone up to eight stone. So from six stone ten, that was pretty amazing. I was eating more. I was able to go out in the height of summer. In fact, three years after my treatment, I went on my first ever camping trip. I was in the middle of a field in the height of summer and I didn’t react.
Marissa: That’s awesome. But then we know something happened in 2010. Despite your doctor’s support, something known as the NHS (publicly funded health care system in the United Kingdom) – they elected to stop your low dose immunotherapy treatments. Where has that left you?
Sarah: I’m on a lot less treatment now. I was also being investigated for other things that were wrong with me. I was given supplements, so I was basically being given extra support. It basically meant that I had to cut out all supplementation. I couldn’t do the investigations. I was even having intravenous infusions of supplements and all sorts to help me along.
I’ve had to rely on donations and grants for my treatment, but it means that I get very little of what I really need. I get the vaccines but I can’t do anything more and my health has suffered as a result.
I fought so hard. I appealed. I even got a solicitor involved – a lawyer – and everything just failed. They made sure that we couldn’t take them to court. It was a technicality of which set of guidelines were being used at the end of the day. But because they won’t clarify which ones we could go to or use, it just meant we can’t go any further with the case. It got dropped, it went to the papers, and even media pressure didn’t do anything.
My mom and a family friend basically said, “Well, we’ve got to do something. We’ll setup an appeal fund.” You used to be able to set up a charity, and indeed the family friend had done this before for her own daughter, so she knew the ropes – the basics to do. They set up what’s called Sarah Elizabeth Allergy Treatment Appeal and my mom has to fundraise and a family friend and a friend from college who’s also involved in this have to fundraise for my treatments so that I can afford my treatments, because without financial support I can’t fund the treatments on my own because I’m unable to work.
Marissa: These are minimal treatments. These aren’t including the infusions and the doctors’ fees. Correct?
Sarah: Yeah. The costs that are covered at the moment are basically the doctors’ fees, the testing for the vaccines and the actual vaccines themselves. Nothing else is being paid for, apart from one blood test. A fairly cheap blood test as well – it’s £45 (I don’t know what is it in dollars). It’s one of the affordable tests which is worth doing. That’s all that gets covered at the moment. Ideally, it will be fantastic if I could have supplementation, have infusions as well.
Marissa: The doctors’ fees?
Sarah: As I say, the doctors’ fees are covered. I have one doctor’s appointment usually every time I go at the moment. I have to have at least one doctor’s appointment a year [32:10 inaudible].
Marissa: I think I saw somewhere that you were asking about £4,000 a year for total coverage of treatment, but it’s not that much. In equivalent to the US, that’s about $6,500 a year, so it’s not like you’re asking for an astronomical amount of support and funding to get you back to where you were before they withdrew this fund, so it’s unbelievable. Now you guys set up the Sarah Elizabeth Allergy Treatment Appeal. Talk about how the listener can help out.
Sarah: Donate basically, however little. Even the price of a cup of coffee, that’s all it would need – a regular donation of a cup of coffee each week. If so many people could do that it would make so much difference, absolutely so much difference.
As you’ve rightly said, it wasn’t a lot of money that I was asking for from the NHS. One of the drugs that they gave me, they were prepared to pay £3,000 a year on that drug alone and it wasn’t doing anything and I was being given all sorts on top. So £4,000 for them was just nothing, absolutely nothing. I know times are hard, but just the price of a cup of coffee. That’s all.
Marissa: Where can they donate, Sarah, throw out the website?
Sarah: There are several ways to donate. For anyone UK based, there’s a standing order form. You can either print this off and send it to your bank or you can grab the details off it and put it into your online banking and donate via that, the set up standing order via your online banking. There is also PayPal where anyone in the world can donate using PayPal and that will go directly to SEATA. This is all on the website on the “Donate” page.
There’s also, again for UK based listeners, a scheme setup called Easy Fundraising and for those who are not able to donate anything extra, if you shop online and you register as a supporter of SEATA with Easy Fundraising and you go to the Easy Fundraising site there are thousands and thousands of retailers there and a proportion of what you spend will be donated to SEATA at no extra charge to yourself. That’s a free way to donate, no more than you’re spending anyway on, say, groceries or presents or whatever. There are, as I said, thousands of retailers. Those are the ways that you can donate to SEATA.
Marissa: Wow, Sarah. Okay, here’s the deal. You’re 30 years old and you’re dealing with some pretty major health issues. Throughout this journey, has there been an important lesson or message that you felt should be shared with the listener?
Sarah: I think understanding, because severe allergies are not as understood as much as they should be, partly because you just don’t hear about it. A lot of patients are tucked away, hidden away in a little bubble, basically because they have to be. But if someone says to you, “Can you alter your ways because it affects me?” do it. It makes such a difference – even if it’s not wearing perfume. It’s not such big deal; it really is not such a big deal. There are people who will make a huge fuss, “Oh yeah, but I will smell otherwise.” We’d much rather smell your BO. Just understand.
If they say, “I can’t eat that” or “I can’t at this place,” believe them because it’s real. No one with severe allergies would want to make this up. You couldn’t make it up, I don’t think to this extent. I appreciate there are a lot of people who will be like, “I think I’ve got gluten allergy,” and in some circles it’s seen as fashion statement, I think. I have seen it. It’s fashionable to be this, that, and the other. We’re not doing it for fashion. We’re doing it because this is our lives. We make these adjustments to actually stay alive, essentially. I think that’s pretty much what I’d say to the listener.
Marissa: Sarah, thank you for opening my eyes to the severe nature of allergies. I think I can personally honestly say that you have forever changed my perspective on allergies and the severity of their nature. So thank you, Sarah.
Sarah: No problem.
Marissa: If you want to learn more about Sarah, please check out her blog SEATAFund.WordPress.com. If you want to learn more about allergies, please check out The Food Allergy & Anaphylaxis Network at FoodAllergy.org. Thank you and much love.