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SM Ambassador Script – Sarah O. (SLIDE 1) (SLIDE 2) I wish life had a satellite view like Google Maps… (SLIDE 3) …kind of like this aerial shot of the Quad ci es where I’m from in Iowa. It would be nice, wouldn’t it, to see the bigger picture in life too? To know where we are, how we got here, and the best route to get where we want to be? Nowhere does this ring true more than in my journey with indolent systemic mastocytosis. To be honest, living so long with so many unknowns in the road ahead has some mes derailed me. I have o en found the only path forward is faith – faith in myself, in my support network, and ul mately, in the belief that, even when the situa on seems out of control, there is a higher purpose in my life and in my story. That is why I’m here today. Of course, everyone is di erent, and other people with SM may experience some or none of the symptoms I did, but I hope what I have to share will encourage you to have faith in all the resources around you – and within you – as you navigate the unpredictable landscape of this disease. Looking back, I had been rolling along, right past my ISM warning signs, without even realizing it. That’s the way it is for a lot of us, right? I had a comfortable, rela vely normal Midwest childhood. Some of my most fond memories are of the mes I spend outdoors, especially around my uncle’s horses. (SLIDE 4) This is a shot of me riding in our local Halloween parade when I was 21 years old. I know it sounds strange to say, but looking back, I think I’m one of the “lucky” ones who eventually received an ISM diagnosis, even though originally, it was misdiagnosed as CM based on my visible signs and symptoms. Some people have signs and symptoms but don’t know they have mast cell disease. My rst sign was a spot on my leg when I was about 35 years old. I’m a redhead, so while a spot isn’t uncommon, it can be anxiety producing. At every annual appointment, I brought it up with my doctor, and year a er year, he pushed on it, watched it blanch, and reassured me it was nothing to worry about. Over me, I developed other symptoms without the slightest clue they might have a common denominator. I began ge ng headaches and pressure in my head that seemed to be related to certain foods I ate – like popcorn – or scents in the air, such as perfume or cologne. A er work, my eyes would be very red and swollen – so much that people were always commen ng about it. I went to an eye doctor, but they couldn’t nd anything wrong even though my own tears made me feel like I was on re. Another issue for me was pain. I had burning pain behind my kneecaps and severe cramping in my gut that kept me up at night. There was also chest pain, low blood pressure, brain fog, extreme night sweats, hand swelling, and indescribable fa gue – the kind of fa gue that wouldn’t let me drive from one end of town to the other without needing to pull over and take a nap. At that me, my doctor a ributed my symptoms to other things. No ma er what issue I brought up, he would point to my age, my weight, or my lack of exercise. It was frustra ng because of how serious these symptoms were for me. But the worst part was my symptoms came on gradually over the course of years, and I eventually started to normalize them. When there’s a detour on your map every single day, you learn to work around it. I convinced myself there wasn’t anything terribly wrong with me. I just needed to exercise more, sleep more, eat more green beans! What nally pushed me to get another opinion was my doctor’s reac on to a spot on my head. “Oh, with you being a redhead, it’s probably a basal cell cancer. They’re very slow growing, I’ll just remove it here in the o ce.” I thought, “Uhh…no. Thank you. I’m going to see a dermatologist on this one.” If you’ve ever been to a dermatologist, you know they look over every inch of your skin. By that me, I had hundreds of spots but never knew it because most of them were located in places I couldn’t see – on the back of my arms, torso, and legs. When the dermatologist saw them, he immediately ini ated a urry of ac vity to get them biopsied. It all seemed so urgent…and then the clinic didn’t get back to me. It wasn’t un l weeks later, when I took my son to the same doctor and let them know I had not received my results, that they pulled my chart and told me I had cutaneous mastocytosis. I later found out this was inaccurate, but at the me, my doctor thought it was CM, and it was decided that there was nothing we needed to do in my case. So, there I was – nine years a er my symptoms rst started – walking around with an actual diagnosis that so many people with this type of disease struggle to get, and it didn’t seem all that signi cant. Li le did I know, my diagnosis would later change to ISM, but again, at the me, I thought, “OK, this thing has a name, but for me, it’s going to resolve.

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SM Ambassador Script – Sarah O. There’s nothing more I can do.” So, that’s what I did – nothing. And all the while, totally under the radar, I was living with a di erent, very serious disease that can have unpredictable and severe consequences. Then, by sheer chance, I came across a random Facebook post that jump started me into ac on. The social media comment I read was, “My boyfriend has mastocytosis and can’t get vaccinated.” Wait a minute – I have mastocytosis. Why can’t I get vaccinated? Later, I found out I actually can get vaccinated – everyone with mast cell disease is di erent and should ask their care team about vaccina ons. But at the me I read that, it triggered some cri cal thinking on my part. Maybe there was more to this than what I thought. So then, I did what I would advise any new mastocytosis pa ent not to do – I searched the internet. Discovering that mast cell disease has no cure caused me to pause; reading that in rare cases mast cell disease can progress and shorten life expectancy stopped me dead in my tracks. I went from a hopeful belief it would go away to a stark realiza on that I would live with this unpredictable disease for the rest of my life. Luckily, I’m a natural skep c, and logically, I knew Dr. Google wasn’t always to be trusted. I’d been living with those spots for years, so obviously, the dire cases I discovered online weren’t my reality. I had come to a pivotal crossroads in my journey: Would I be the victor or a vic m of my circumstances? Would I nd my way by faith or follow a path of fear? I picked up the phone and dialed my general prac oner. “You have what?” he asked when I told him about my CM diagnosis. “You need to get in here right away!” The next day, he told me he had heard about mastocytosis in medical school, but it was at a one-hour, here-aresome-things-you-can-run-into sort of seminar. He was amazed he even remembered it. Although this was the doctor who had originally a ributed my symptoms to other causes, he made the e ort to learn along with me that this disease is rare and not easily recognized, but now that we were con rming it, we would treat it proac vely. He prescribed epinephrine and an histamines and referred me to an allergist, and that was when I really started to get the help I needed. My allergist turned out to be one of the most caring and empathe c people I’ve ever met. From the start, she listened to me and believed what I told her about my experiences. She took my symptoms seriously, began monitoring my tryptase levels, researched on her own, and prescribed what she thought would work best for me. She was instrumental in steering the course of my disease management plan. In 2018, when my symptoms worsened, she referred me to an immunologist who was also incredibly kind and though ul. So, the three of them – my GP, my allergist, and my immunologist all began to listen to me and work together to develop a treatment plan that would be best for me. In August of 2019, my tryptase level was elevated and my spots were mul plying, so my immunologist ordered a bone marrow biopsy. We had delayed it because it’s an expensive and very painful procedure, and it wouldn’t have changed my treatment. But, with my symptoms increasing, we needed to determine a diagnosis and the severity of the disease and get a baseline to monitor symptoms of the disease. The results showed abnormal mast cell accumula on and the typical muta on and spindle-shaped cells associated with indolent systemic mastocytosis, a sub-type of SM that can be debilita ng. It is not known how long I’d been systemic, but we suspected several years – based on my symptoms and the fact that systemic mastocytosis is o en misdiagnosed. My doctor and I both understand that, in my case, my ISM symptoms are worsening, but there is nothing more we can do to prevent it. What we can do is communicate. My doctor is very responsive, and aside from my regular checkups, if my symptoms worsen or I have a concern, he encourages me to call or email him, and he calls or emails me back. The important thing is for me to partner with my healthcare team to have the best chance of nding relief and living well in spite of SM. In addi on to my healthcare team, my family was a huge part of my support network throughout the process of ge ng a diagnosis and learning to manage my symptoms. I’m not one to sugarcoat anything. I tend to be direct, so I just shared it with them, and they were incredibly suppor ve. They tried to learn how this disease a ects me, and they made adjustments in their own lives to reduce poten al threats to my health and safety. David

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SM Ambassador Script – Sarah O. stopped wearing cologne and changed shampoos. On tough days, my children would jump in to help. It was harder for my extended family to understand what was going on since they didn’t have an up-close view of what I was living with. But they’ve tried to be encouraging, and I’m thankful because many people don’t even have that. Another key component of my support system early on was the pa ent advocacy group, the Mastocytosis Society – now known as The Mast Cell Disease Society – and some of the resources they provide on their website. Like I said, you have to take the internet stories you read with a grain of salt. Everyone who lives with this disease has di erent triggers, di erent symptoms, di erent responses to treatment, and di erent outcomes. I could have allowed anecdotal evidence from someone else’s experience to mislead me, but I realized that it’s important to tap into scien cally based informa on. Yes, I push back against this disease with every ounce of faith I have, but I also empower myself with knowledge, and I found this organiza on to be a valuable resource for prac cal insight about SM. If you suspect you have SM, my advice is to talk to your healthcare provider about the disease and to read as much informa on as you can from trustworthy sources. In addi on to TMS, other advocacy groups include Global Genes RARE Founda on Alliance and the Na onal Organiza on for Rare Disorders. Your healthcare provider is the best source of informa on for medical advice and guidance about trea ng your own SM. You might also consider keeping a daily journal of everything – from whether or not your eye was twitching to if your toe hurt. From how you felt physically to your mental/emo onal state. And from the foods you ate to the things you smelled and the people you were around that day. It may help you and your doctor understand correla ons and iden fy your triggers, which can help you be that much closer to where we’d all like to be – leading a very func onal and gra fying life. I wish I’d gured out my triggers sooner; it would have saved me lots of lost days. Eventually, I isolated many of them and was able to avoid or manage my exposure to them more successfully. I doubt I’ll ever have a day that’s totally symptom free, but I’m thankful to no longer be walking around in misery on a regular basis. To maintain this, I stay away from scents from perfumes, laundry detergents, shampoos, and owers. I haven’t been to our local mall in years because of all the fragrances that live there, especially around holidays. Extreme hot or cold temperatures, hormonal changes, stress – all of these can set o my symptoms. Two of my most challenging triggers are related to pain and food. I have to be mindful of what I’m doing at all mes because if I fall or twist the wrong way, I could have a pain event that starts with swelling and hives and ends with an anaphylaxis episode. Also, if I consume pork, I become seriously ill within minutes, and it would probably last for days. Consuming anything too spicy or containing food addi ves like MSG, meat tenderizer, or ar cial coloring is problema c for me too. I’m usually the one pulling a granola bar out of my bag at family func ons and corporate conferences because there’s nothing I can eat. My biggest challenges with this disease are ge ng the medica ons right and making sure my environment is as safe and trigger free as possible. It took a lot of trial and error, but by following my mast cell management regimen and avoiding known triggers, I have eliminated many of my symptoms and diminished others, so I am no longer reac ng to things constantly. On a daily basis, I take a mast cell stabilizer, two di erent types of an histamine, and an antacid for diges ve issues. I am monitored regularly by my healthcare team, including my primary care doctor, my allergist, and my urologist and immunologist, both of whom I visit yearly – staggering my appointments so I visit one and then the other six months later. The road to where I am today has been a di cult one, but I’m proud of how far I’ve come. Simple pleasures, like spending me outdoors, hiking, and camping mean so much to me now. I also s ll adore horses, and if I had my way, I’d have a barn and a horse I could ride every day. (SLIDE 5) I’ve passed this torch to my daughter, Cidney, who has grown up enjoying my uncle’s horses too, as you can see from these photos. Riding is a bigger challenge

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SM Ambassador Script – Sarah O. for me now because the vibra on and bouncing could trigger a pain event, but I’ll never stop apprecia ng these magni cent animals. Some of the other things that bring me joy are mee ng new people, ea ng out, and taking road trips! I love nothing more than to pile my family – whoever will go – into a car and drive. (SLIDE 6) Here’s a shot taken at Starved Rock State Park in Illinois a few years back. And this photo was taken in New York City during a “sweep the East coast in a week” trip we did when my dad’s health started to deteriorate. He had never been outside Iowa, and my family had never traveled together. Now, I’m obsessed! We’ve been to Pennsylvania, Connec cut, New York, North Carolina, Mississippi, Tennessee, Kentucky, Florida, and many state parks along the way. And do you want to know an amazing thing? Not long ago, I got my elderly mother in the car, pulled up that Google Map, and drove all the way from my home in Iowa to North Carolina. Just a few years ago, that would have been impossible for me, but I felt great the en re me. I’m certain what made this li le miracle happen was aligning myself with a team of dedicated doctors who pointed me in the right direc on – and then having the kind of faith that drives me to never stop looking for answers or advoca ng for myself. A er all, I have to stay healthy so we can begin exploring west of Iowa! (SLIDE 7) I’m also mo vated to remain healthy for those who mean the absolute world to me – my family. These are some recent shots of me with my children and husband, David. (SLIDE 8) Of course, I can’t leave out these two li le guys. I have the privilege and challenge of helping raise my twin grandsons, so I need to do everything I can to be here for them when they need me too. Had I not seen my dermatologist, I might s ll be returning to my GP’s o ce year a er year wondering if the spots on my skin were normal signs of aging. I’m not going to lie, ge ng my diagnosis was devasta ng, but only un l I knew more. I could have avoided a lot of emo onal stress had I known then I would nd ways to manage this disease. Granted, SM doesn’t come with a mapped-out strategy for how to live with it. We are all di erent and have to discover our own way. One thing’s for sure though – there’s only one direc on you should move on this journey, and that’s forward. Educate yourself, use the resources available, talk to your healthcare provider, build your support system, and keep moving forward. (SLIDE 9) I’m happy to answer your ques ons about my SM experience. Remember, this is my experience; yours may be di erent. Please talk to your healthcare provider if you have any medical ques ons. USBP-PR-20.037.1 02/2021

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