Patient Script by victoriagunbatar

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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