ALEXA RAND
HEART DISEASE
STORIES
About Alexa
Hello everybody! My name is Alexa Rand and I'm currently a sophomore at Northeastern University majoring in Music Industry with a minor in Psychology. I grew up in Long Island, NY and I've always had a heavy interest in music and music production. On campus, I'm apart of Diversability which is the campus' first disability student organization, Tastemakers Music Magazine and NUStage Theatre Company.
What do you want to tell the world about heart disease when given the microphone?
If I was handed the microphone to tell the world more about my chronic illness, I think I would want them to know that just because someone appears okay and as if they live a completely normal life despite their illness, there is so much that goes on behind the scenes that many young kids like me with heart disease will try to hide. A lot of the time I come off very upbeat and go with the flow, however, what people don't realize is that half the time, it's simply the way I cope with a lot of issues and while I may act like everything is okay at a certain point in time, in reality I'm awaiting news on a pending surgery or experiencing reactions to new medication and even the simplest task like doing laundry can leave me fatigued for an entire day. There is also this stigma that if you tell someone you have heart disease, it is assumed your condition is fatal, but alot of the times individuals with heart disease can live near-normal lives and achieve just as much as any other person.
If there is anything I'd like people to take away the most, it's that kids like me aren't people to feel pity towards; I feel proud to say my chronic illness has taught me this new sense of resilience and because of it, I've come to realize what I wish most people understood was that we don't ask for you to feel bad for us, but to know we are doing the absolute best we can.
KELLY BARNSLEY
HYPOTHYROIDISM, ETC.
About Kelly
Hey! I'm Kelly (she/fae) and I am a fourth year PHD chemistry and chemical biology student! My sister, my mother, my grandmother and I all suffer from multiple chronic illnesses. Runs in the family I guess. Mine started manifesting in my early 20s. Finishing undergrad was a struggle because I was always exhausted. Turned out it was hypothyroidism. My stomach was often upset - food allergies. Since then I’ve racked up several more: sleep apnea, diabetes, binocular heterophoria. That last one is especially fun since it limits the time I can spend reading or else I get migraines. As a grad student studying computational chemistry, reading papers and code is a large part of my job.
I often feel like I’m Heracles fighting the Lernaean Hydra. Every time I start to get a handle on one health issue, I wonder to myself: “Is this it? Will there be any new heads to fight after this?” It’s exhausting, but it’s also given me perspective. I’d like to think it’s made me more compassionate and patient with others, because you never know what invisible issues other people might be carrying.
What do you want to tell the world about your multiple chronic illnesses when given the microphone?
If I could make abled folk understand one thing, it would be that being able-bodied is always a temporary state of affairs. Eventually, your body will fail you in unexpected ways, and when it does, you will have a much easier time if you are able to access accommodations. Therefore, a compassionate society would focus not on “fixing” defective people, but instead on providing accommodations so that everyone can do the things they want to do and live their life on their own terms. I wish we lived in a compassionate society."
EMILY MEDEIROS
ENDOMETRIOSIS
About Emily
Hi friends! My name is Emily Medeiros and I am the lucky big sister of Christina who is the mastermind behind this project! I grew up in Rhode Island, went to Emmanuel College in Boston and studied pre-med. I have always been interested in the human body and how and why it works. I believe it stemmed from me being in and out of doctors appointments and wanting to know what was going on in my own body. Instead of taking the medical school route I am so happy in my decision to change paths and apply to Physician Assistant school. I just recently completed my 1st year of PA school at Massachusetts College of Pharmacy and Health Sciences. I have two years to go and I can’t wait to get my white coat and practice medicine! I worked in the Emergency Department at Tufts Medical Center for the past 2 years.
What do you want to tell the world about Endometriosis when given the microphone?
Here is a little medical background on endo because I believe that is not very well known. Endometrium is a tissue that lines the uterus and thickens with each menstrual cycle and then sheds. This shedding is bleeding and what the general public knows as a period. Endometriosis is a disorder where endometrial cells also grow outside of the uterus on surrounding organs for example. This tissue also sheds but has no where to go so there is internal bleeding. The body responds with inflammation as it tries to recruit help to clear the blood. I think I would want people to know that the idea of endo just being a 'worse period' is extremely misrepresentative and hurtful. My symptoms include, pelvic pain, back pain, nausea and vomiting, headache, digestive problems, fluctuating urinary frequency, pain with bowel movements, pain with intercourse, and very heavy bleeding. I am on my third IUD and I take an additional progesterone pill to prevent menstrual. First I want to tell people although period cramps are bad, this is 10 times worse. I use to lay in a steaming hot bathtub for hours because of the pain.
BROOKE ELMORE
CELIAC DISEASE
About Brooke
Hi! My name is Brooke and I am a senior at Northeastern University studying Graphic & Information Design. I grew up outside of Philadelphia but Boston is where I truly feel at home, and I will be staying here after I graduate in May. I work for the JK Food Group in Boston, and I’ve always had a passion for food, hospitality and the restaurant business. It’s my dream to open my own restaurant one day! I also run a gluten-free Instagram account where I document my experiences with Celiac Disease, and its @celiactivist.
What do you want to tell the world about Celiac disease when given the microphone?
If I were given the microphone to talk about my chronic illness, I would tell people that things aren’t always as simple as they seem. When I was diagnosed with Celiac, the treatment presented to me was simple: just go gluten-free. But living with this disease is so much more than that. It involves advocating for yourself, learning how to read food labels, calling restaurants ahead of time, bringing your own food with you places, and missing whole days of school or work due to an unknown crumb of gluten that slipped into your food. It isn’t as simple as it once seemed.
That being said, for all the ways Celiac has made my life a little more challenging, it has also brought a lot of good into my life. I have connected with people around the world on the shared basis of having Celiac Disease. I have tried foods I never would have if I hadn’t had Celiac. I have learned how to speak up for myself and my needs because of Celiac. It truly has made me who I am today.
ANNA GEIGER
POTS AND CVID
About Anna
My name is Anna Geiger, and I am a fourth-year business and psychology major concentrating in healthcare management/consulting. I am a student, a graphic designer, a model, and I also happen to have some chronic health issues. The first is postural orthostatic tachycardia syndrome (POTS) and the other is a congenital immune deficiency that falls under the category of a primary immunodeficiency condition called CVID.
Yes, you can’t see my conditions. You also probably couldn't see how I feared almost every day in the beginning days of the pandemic because of my weak immune system. You probably didn’t see the judgmental look or snarky comment that person made when I had to sit in an unconventional place because my of unbearable POTS symptoms. You probably didn’t see me gathering the courage to stand up against my own doctor for not listening to me when an infection took over my life.
What do you want to tell the world about POTS and/or CVID when given the microphone?
Much like the conditions themselves, there is another fight happening— one to prove their existences. I ask myself why I have simultaneously become a self-advocate while taking care of a body that can’t always take care of itself. Do I have to peel open my autonomic nervous system to please you? Show my lack of antibodies for you to respect my boundaries?
That being said, I am seeing so many positives in the healthcare field in terms of openness, education, and accessibility over the past few years. I think these questions I ask myself may fall away one day. In the meantime, I wear the face of a body that operates far beyond my years— and I will love it anyways. My experiences, although some difficult, have taken me to places I never could’ve imagined, and I can’t wait to share what I’ve learned and make the world a better place.
ISABEL RODRIGUEZ
CHRONIC MIGRAINES
About Isabel
Hi everyone! My name is Isabel Rodriguez and I’m a first-year Journalism and International Affairs major at Northeastern University. As an aspiring (and practicing) writer, I tend to feel a stronger pull towards telling the stories of marginalized voices due to my personal experiences as both a minority and a chronically ill person.
When I was first diagnosed, it was difficult for me to comprehend the categorization of migraine as “chronic.” I, much like many people I encountered after my diagnosis, had only used language to describe what I was feeling as lots of “bad headaches.” It took me a while to realize that was the wrong way of looking at it, that I deserved to clarify the full weight of my condition, because it wasn’t “just headaches” if I was getting one or two every day, each too painful to function as I normally would.
What do you want to tell the world about chronic migraines when given the microphone?
If I were given the microphone to talk about my chronic illness, I would want to really emphasize the importance of empathy and compassion. You cannot see my illness, as well as the invisible illnesses faced by so many, but avoiding assumptions and maintaining an open mind when you encounter someone who may be struggling is the best way to help.
For myself, it’s difficult to discuss my chronic illness for fear that it will become the only thing people identify me with. I think that’s a universal fear of chronically ill people, that if we voice our invisible pain, it will be all we’re seen as. We also live well-rounded, happy lives. Our illnesses don’t limit our accomplishments.
ISABELLA WHITEHILL
LUPUS
About Isabella
We are still waiting to hear back from Isabella, but until then, let's use this space to educate the public on Lupus. Lupus is a chronic autoimmune disease in which the immune system attacks healthy tissues in the body, leading to inflammation and damage in various organs such as the skin, joints, kidneys, and heart. The exact cause of lupus is unknown, but it is believed to be influenced by genetics, hormones, and environmental factors. Lupus can affect people of any age, gender, or ethnicity, but it is more common in women and people of color. Symptoms of lupus can vary widely and may include fatigue, joint pain, skin rashes, fever, and kidney problems. There is no cure for lupus, but medications and lifestyle changes can help manage symptoms and prevent complications.
To learn more about lupus, there are many reputable websites and organizations that provide information, support, and resources. Some of these include the Lupus Foundation of America (www.lupus.org), the American College of Rheumatology (www.rheumatology.org), the National Institute of Arthritis and Musculoskeletal and Skin Diseases (www.niams.nih.gov), and the Lupus Research Alliance (www.lupusresearch.org). These websites offer a wealth of information on lupus, including its symptoms, diagnosis, treatment options, and coping strategies. They also provide opportunities to connect with other people living with lupus and to participate in research studies and clinical trials.
JEN DO
VASCULAR MALFORMATION
About Jen
We are still waiting to hear back from Jen, but until then, let's use this space to educate the public on vascular malformations. Vascular malformations refer to abnormal growths or development of blood vessels in the body. They can occur anywhere in the body, but are commonly found in the skin, muscles, bones, and internal organs. Some common types of vascular malformations include arteriovenous malformations (AVMs), capillary malformations, venous malformations, and lymphatic malformations. Symptoms may vary depending on the type and location of the malformation, but can include pain, swelling, and disfigurement. Treatment options may include surgery, embolization, sclerotherapy, or radiation therapy.
For those looking to educate themselves and learn more about vascular malformations, there are several reputable websites to explore. The Vascular Birthmarks Foundation (birthmark.org) is a nonprofit organization that provides resources and support for individuals affected by vascular malformations. The National Organization for Rare Disorders (rarediseases.org) is another helpful resource that provides information on rare diseases, including vascular malformations. The Vascular Anomalies Center at Boston Children's Hospital (childrenshospital.org/centers-and-services/vascular-anomalies-center) is a leading center for the diagnosis, treatment, and research of vascular malformations in children and adults. These websites can provide valuable information and resources for individuals and families affected by vascular malformations.