Warrior of the Month
Our Warrior of the Month Program aims to recognize the bravery and strength of anyone in our community fighting a health battle. One warrior is showcased each month and their story is published right here on our site, as well as shared on our social channels. Nominate yourself or a warrior you know to be featured!
Robyn is our January Warrior of the Month!
Robyn is a warrior with epilepsy, diagnosed in January of 2016. She says she fights like a warrior every single day. When she was diagnosed, Robyn asked, “Why me?”. She then realized “Why NOT me?” because she feels she can turn a bad thing into helping others that are going through something similar.
She uses her Instagram, @robyn_the_epileptic_ravenclaw, to spread awareness about her epilepsy and share her story. She wants to show others that they aren’t alone in this fight even if it starts to feel like it. Robyn says that although epilepsy, like many chronic illnesses, can be unpredictable and scary, you shouldn’t forget that there are people out there that are cheering you on!
She believes that even with epilepsy, you can still do something incredible and you should leave behind something bigger than yourself.
To read more about Robyn and her story, follow her Instagram @robyn_the_epileptic_ravenclaw
November 2022: Michael
Our Warrior of the Month for November is Michael!!
Michael goes by @cfssuperhero on Instagram and is from the Gold Coast in Australia. He is a writer and advocate for people with chronic illness and disabilities.
Since the age of 15, he has lived with Myalgia Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Postural Tachycardia Syndrome (POTS). He woke up one day exhausted, which seemed like it came out of nowhere. It got worse throughout the day to the point where he was only able to lay still.
For many years during that time, Michael was able to pretend to be normal to the outside world. While he was home and in the back rooms at work, he experienced pain and would collapse in areas he couldn’t be seen.
7 years ago, Michael became very ill and his condition turned severe. This made him no longer able to hide the effects it was causing on his body. He completely lost the ability to walk, was bedridden, unable to shower, chew, or even move his limbs. After this happened, he decided to make his comic and social media page.
Michael now has around 14,000 followers and is advocating for people that are going through similar situations. His page is filled with posts similar to blog posts. He also shares uplifting posts and his humorous comics. His comics have helped him connect with many beautiful warriors all over the world and he is so grateful to know so many.
This year Michael was able to turn these comics from his Instagram into a book! The book is available on Amazon and called “Chronic Fatigue Superhero.”
He is still living with his condition severely, but he continues to see so much hope and beauty in life, even if it’s something harder to spot. He is continuing each day by sharing, teaching, and learning from those around him. Michael hopes that one day we can all find a way through and see how humanity was always meant to be together.
September 2022: Natalie
Our September Warrior of the Month is Natalie!
In August of 2021, Natalie was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) after being sick with COVID. Like other forms of dysautonomia, POTS is a disorder that affects the nervous system. As such, it throws off normal autonomic body functions such as heart rate, breathing, blood pressure, sweating, digestion, temperature regulation, and more.
Natalie’s chronic illness journey started when she was training for a half marathon. She was out for a run and began to feel like she was going to pass out, followed by sharp pains in her chest. This is when she knew something was wrong; this was not normal for her. Next came extreme fatigue, heart palpitations, exercise intolerance, and lots of pre-syncope symptoms. Pre-syncope is when a person feels as if they are about to faint. It can include symptoms like
lightheadedness, nausea, and even issues with vision--just to name a few. She was seen by numerous doctors and had several Emergency Room visits. All the while, Natalie was consistently told that it was anxiety and she needed to go on medication. Being disregarded by health professionals led to a brief period of depression, and falsely believing that it was all in her head. But Natalie never stopped fighting, and knew that if she found the right doctor, they would give her the medical attention she needed.
For many months, Natalie went through frustration, exhaustion, and sadness. While days can still look like this, she chooses to take a more positive approach. This journey made her realize that chronic illness made her become a new, even better person. She’s that much more aware of how grateful she is for the small things in life, as well as the people in it. But this perspective wasn’t something that happened overnight. Instead, Natalie says it takes a lot of time, therapy, and practice to gain (and maintain) this outlook.
Exercising, salt, hydration, and listening to her body has helped her make progress this past year. She puts in enormous amounts of effort to be where she is today, but also knows that she still has a long way to go. Natalie thanks her friends and family for allowing her to have her bad days, and for being there to cheer her on during good days.
Natalie's advice for anyone struggling with chronic illness is to never stop searching for a medical professional that will *listen* to you. And when you do, always be the advocate for yourself and others. To her, it’s important to understand that you are NOT your illness and not to allow it to take the good things away from you—remember to fight back! She would also like people with POTS, specifically, to know that physical therapy truly helped her. Working with a professional to slowly build back endurance and muscle over time allowed her to be where she is now. Natalie says that it's hard, and some days the idea sounds horrible, but continuing to fight is important.
Lastly, Natalie wants our community to remember that it is okay to not be okay. For her, life is currently filled with many emotions and challenges as she tackles her last year of college. But she allows herself to feel her emotions and learn to accept the situations—and encourages other to do so as well. Natalie emphasizes allowing yourself to feel any emotion you want to!
Please feel free to reach out to Natalie if you’d like to discuss POTS, chronic illness, mental health… or just need a new buddy! You are NOT alone! You can follow Natalie on Instagram: @allthepotsibilities
August 2022: Kenzie
Our August Warrior of the Month is Kenzie!
Kenzie has multiple chronic illnesses that she says disable her in several ways. However, she lives on a farm and likes to consider herself a chronically ill cowgirl! On her good days Kenzie gets to take care of animals and work on projects on her family’s property. Her family farm was originally homesteaded in 1863 by her family as one of the first homesteads in their county.
Kenzie has always tried her best to spread awareness about chronic illness. Her journey has been a long and rough path. She said she was rolling hay bales and helping her parents at a young age. This of course came with bumps, bruises, and mud on her just about every day. She started having “growing pains” pretty quickly once she started attending school.
Once she started sports, that’s when things started to progress. She began to have pain in her knees, ankles, hips, shoulders, and wrists. She started in junior league when she was 15 and became team captain the following year along with doing a junior firefighter program but had to take a break due to being diagnosed with fibromyalgia.
Her health suddenly went south fast after her second year of college. She could barely take care of herself, let alone drive to class, weld for four hours, do other school work, and work part time. One day while completing assignments, her psychology instructor mentioned she should look into Ehlers Danlos Syndrome. When she did, it was the first time her life started to make sense to her.
Finally, she got the confirmation that she has hyper-mobile Ehlers Danlos Syndrome. This means she is very bendy, her joints don’t stay in place very well, and she lives with a lot of full body chronic pain. Along with that she deals with IBS, gluten and dairy allergies, anxiety, depression, dysautonomia, complex ptsd, degenerative disc disease, and might be on the autism spectrum with ADHD.
Kenzie says all these experiences were brutal for her, but loves the saying, “the toughest battles are given to the strongest warriors”, and has really taken it to heart. It has gotten her through some of the worst times in her life, and helped her build resilience for what else she is meant to do with her life.
You can learn more about Kenzie and her journey on her Instagram @the_chronically_ill_cowgirl
July 2022: Isabella
Our July Warrior of the Month is Isabella.
Isabella is 19 years old and in February 2014 she was diagnosed with Lupus. She says it has been a long journey of questions before then. When she was in preschool, Isabella’s teacher would massage her legs because they were always sore. She had to discontinue dance classes and could no longer participate in miming with her church’s mime team.
Eventually, it became difficult for her to run and
play, to climb stairs, and sunlight/heat exposure would cause her to break out into hives. She went to her pediatrician and was diagnosed with growing pains.
Fast forward to 2014, she visited her pediatrician for an annual check-up and her doctor observed visibly swollen glands below Isabella’s face. The doctor referred her to an ENT who found abnormalities in her blood and referred her to her present pediatric rheumatologist at Levine’s Children’s Hospital. The pediatric rheumatologist ordered many blood tests. At the following visit with him, she was diagnosed with Lupus SLE.
Her whole outlook on life changed when she found out what Lupus actually was. Seeing the words “no cure” left her questioning everything she thought she had figured out in life. She was on her medications and for a while, she felt suffocated. In the years following she learned to manage her chronic illness that had no cure.
Isabella says that experiencing a life-changing illness gave her a greater grace because it just allowed her to change her story and experience the highs and lows while she came out stronger and wiser.
Lupus is an illness that almost broke her. It showed her that although she hit what might be her lowest point, she didn’t give up. She says she is so humbled and thankful to have met so many phenomenal people in the chronic/autoimmune disease community. Being a part of a community is something she considers so empowering and influential. it encouraged her to share her voice and interact with others.
She refused to give up despite being confronted with an unimaginable battle. She had to feel it, grow through it, and let God meet her where she was.
Isabella is entering her sophomore year of college at Wingate University and currently working part-time at a childcare facility as an infant/toddler teacher! She is currently taking the CNA-1 course over the summer at the local community college to help as she prepares for the nursing program at Wingate.
You can learn more about Isabella by following her on Instagram @bellamccray
June 2022: Tayla
Tayla is our June Warrior Of The Month!
Tayla has lived with Congenital Myasthenic Syndrome (CMS)—a rare disorder that had a gradual onset from 17 years old.
She says having a rare disease has profoundly shaped her perspective. She has a whole new meaning to freedom is a privilege and is not necessarily a given thing.
While autonomy over her body has been challenged, she continually seeks to feel safe and at home within her skin. This includes accepting new limits and feeling comfortable asking for help when needed. She has a new relationship with rest and now sees it as essential and productive!
You can follow Tayla on Instagram @taytay.jade
May 2022: Jenna
Jenna is our May Warrior of the Month!!
When Jenna was 11 years old she was diagnosed with psoriasis. The diagnosis came after two girls were braiding her hair and noticed spots on her hairline and neck. She thought it was dandruff, but it eventually took over her entire scalp. Several years later in 11th grade she had her second psoriasis flare after recovering from mononucleosis. However, this time it quickly spread to over 50% of her body. Especially on her back, neck, chest, and face.
She went to the pediatric rheumatologist for the first time to receive some more intense treatment for her psoriasis. After this appointment she left with three more diagnosis of rheumatoid arthritis, scoliosis, and hyper mobility spectrum disorder. Unfortunately, the first medicine she tried made almost no impact on her rheumatoid
arthritis and psoriasis.
During Jenna’s senior year of high school, she was in a battle with her insurance company. They denied her new life medicine nine times. While this battle was happening, her psoriasis began to cause hair loss, bullying at school was getting worse, and she says every day was filled with tears. To make it worse, at the beginning of the pandemic she tested positive with tuberculosis. After 6 months of tuberculosis treatment and her 10th try, insurance finally decided they would cover her new medicine and physical therapy for her arthritis.
Thanks to this life changing medicine, Jenna has been in remission from psoriasis for about a year and a half. But she unfortunately still struggles daily with joint pain and clicking, stiff limbs (especially fingers and knees), bruising, and extreme fatigue. She refuses to let her diagnoses define her in her everyday life and my hopes and dreams for her future.
She is currently in the process of transferring to Auburn University for aerospace engineering and physics. Her hope is to further the future of deep space exploration and aid in making life multi-planetary. She hopes to become an astronaut one day and pave the way for the future generation of women in science. Science is for everyone and should be accessible to all despite race, gender, or disability.
You can follow Jenna on Instagram at @jennatheastronaut or on Tumblr at @photonblasters.
April 2022: Nicole
Our April Warrior of the Month is Nicole!
Nicole is a medical student studying to work with children that have cancer or chronic illnesses! During her first year of medical school, Nicole noticed that she was starting to get dizzy any time she stood up. She was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and eventually her doctors discovered she had Ehlers Danlos Syndrome (EDS).
Nicole is continuing to study to become a doctor, while living with her conditions. She hopes to become the doctor that will help young patients after other doctors have dismissed them. This is something Nicole says happens often with POTS and EDS.
When she was first diagnosed, Nicole noticed how teens and young adults were often overlooked. She wanted to do something to make them feel special. This is why she started her small business, Potsie Packs Care Packages. Potsie Packs sends care packages to other chronically ill people that apply on their Instagram! The care packages suit ages 10-30. Nicole says “Oftentimes, teens and young adults fighting chronic illnesses and cancer find themselves caught between both too young and too old to receive care packages catered to them. Potsie Packs aims to provide unique gifts and helpful resources to this age group through our care package program. However, most importantly, we aim to make people smile as they go through some of the toughest days of their lives.”
You can follow Potsie Packs on Instagram. Their handle is @potsiepacks.
March 2022: Nic
Our March Warrior of the Month is Nic!
Nic was diagnosed with Transverse Myelitis when he was 12 years old. One day, Nic felt a little sick before school, and by lunchtime he was struggling to walk and needed to be helped into his mom’s car. Nic left to the emergency room and was eventually admitted, from which point it took a few weeks to finally get a diagnosis.
Nic lives to show others that it is more than okay to struggle, mentally and physically, as long as you can ask for help and get up to try another day. He believes no one should be embarrassed of their conditions, those you can see and those that are invisible, and they should be proud of everything they have overcome so far. Although Nic’s conditions are mostly physical and chronic pain related, he also struggles with his mental health (including addiction) as well.
In spite of these struggles, Nic loves to participate in weight training to show others what can be accomplished with perseverance and dedication. “When I was young, my doctors weren’t convinced that I would be able to walk again and I might be in a wheelchair for the rest of my life. In response, I used a cane to exit the hospital a couple months later and now years later I can run on an elliptical machine. I may walk with a visible limp that I struggled to cope with as a child, but I learned to love who I was and appreciate what I was able to accomplish. I even decided to start wearing cool shoes to give the gawkers something nice to look at. My struggles are not the same as everybody else’s but I want everyone reading this to know: I empathize with what you are going through and I believe in your strength to succeed. Love yourself and make yourself proud, because at the end of the day your opinion of you is the only one that matters.”
Nic is pursuing a mechanical engineering career in hopes to contribute to the future of space colonies, but also design smart prosthetics to aid those in need. He wants to see a future in which no one is made to feel unacceptable or less than. He believes in equal access to, and the promotion of, access to STEM in under-served communities including minorities, women, and those with disabilities.
February 2022: Andy
February’s Warrior of the Month is Andy!
Andy has shown symptoms of Ehlers Danlos Syndrome (EDS), a connective tissue disorder, since she was little. However, since her dad’s side of the family is tall always wrote off her pain as normal growing pains despite her being short.
At around 15, Andy had her first allergic reaction during a school field trip. She saw a doctor who told her she was allergic to dairy. Though even after being extra careful she kept having allergic reactions. After about 3 years and 5 doctors, a doctor finally brought up Mast Cell Activation Syndrome (MCAS). A year later she developed and was later diagnosed with gastroparesis. Then Poly-orthostatic Tachycardia Syndrome (POTS) a few months later. While at one of her doctor’s appointments, her doctor noticed she had hypermobile elbows and suggested EDS could be causing the multiple medical
conditions to be present at once also known as comorbidities. Later that summer, she received her official hEDS diagnoses.
Andy has a service dog named Obi Wan that she originally got to be her dairy alert dog. After being diagnosed with MCAS and noticing she had a natural alert Obi Wan became her medical alert service dog. She also now alerts to POTS episodes as well as helping with some mobility tasks. Andy says that training her dog helped her meet other people with her same disabilities which helped her feel a lot better about her life changing so quickly in a few years. It’s helped her feel less alone and helps to see how other people cope and what has helped them with their disabilities.
Andy is also a small business owner!! She makes service dog gear and her Instagram is @galaxypawsgear if you want to give her a follow!
January 2022: Stefani
Our January warrior of the month is Stefani!!
Stefani is a mom of two boys, a small business owner, and of course chronic illness warrior. She is a freelance hair and makeup artist based in Pennsylvania. However, she travels worldwide for work.
During quarantine, Stefani noticed her health was starting to rapidly decline and decided to get checked out. She was diagnosed with fibromyalgia, Hashimoto’s thyroid disease, and severe vitamin deficiency. Although she has learned to accept these new diagnoses, she also says it doesn’t make her job easier considering how much she needs to work with her hands. As well as the amount of time spent standing and driving during a job. She also says that although this has happened during the pandemic, she still hasn’t had much of a break because the season is doubling, and this year has turned out to be the biggest wedding season they’ve ever had.
She says that she refuses to let these diagnoses define her craft and makes sure to put her mental health a top priority. One way she does this is by taking time each day to do something that brings her joy. With past battles with anxiety and depression, she says it takes a lot of work to remain positive. She knows that not everyone understands what it is like to live with a daily battle. That a lot of the time people can feel overlooked or misunderstood, so she believes that taking the time to love yourself is the best thing you can do when learning to live with an invisible illness.
Her boys remind her every day about the importance to be a role mode of a strong woman in their lives. They are patient with her on flare up days and she says she is eternally grateful for being blessed with two beautiful babies who provide understanding, love and grace on my hardest days. Her husband has also been extremely supportive and helpful during all of the chaos of juggling her business while learning to live with the new battles of health. She says that having such a strong support system at home has been incredibly comforting.
Stefani says she tries to advocate for chronic illnesses as much as possible because she believes it’s heartbreaking to know that not everyone has this great support system. She hopes to inspire those around her to pursue happiness and love for and with yourself. She says to realize you’re not alone on this walk and embrace yourself for your imperfections. Even if it’s classified as a disease, there are no limitations to choose how we view that battle everyday and to choose love always!
You can follow Stefani’s Instagram @Bona.fide.beauty.co
December 2021: Nikita
Nikita is our Warrior of the Month for December!!
In 2008, Nikita started to realize that something was wrong with her health. About a month after her honeymoon she was in the hospital for how much pain she was in. However, she didn’t know the cause.
Doctors believed that the pain was stomach related and she was referred to a specialist. After trying a lot of different diets as well as running tests, Nikita was still in pain and nothing was changing. She mentions that at this time her periods were very heavy and the doctor eventually suggested endometriosis might be the cause of her pain.
In 2009, she was diagnosed with endometriosis after an exploratory surgery. After years of battling the chronic illness, she decided to have a hysterectomy.
Nikita encourages people to advocate for themselves because other people can’t always feel what is happening inside your body. Only you know. She says that as a business owner her chronic illness has taught her to “Know thyself”.
Her business is something that helps her feel in control considering chronic illness is such an unexpected thing. As a business owner she wants to help others. She is a photographer, podcaster, and coach for other creative small business owners with chronic illness. You can follow Nikita on instagram @thrivewithnikita and her podcast @craftedtothrive. Highly recommend giving Crafted to Thrive a listen if you are a small business owner!!
November 2021: Katie
Our Warrior of the Month for November is Katie!
Katie was diagnosed with Type One Diabetes at the age of 11. A few days before she was diagnosed, Katie had a big climbing
competition and she came home feeling very sick. She was later diagnosed when she went to urgent care.
Katie strives to show other diabetics that it is okay to show their pumps by wearing
hers in a visible place. She keeps both her glucose monitor and insulin pumps visible on her
arms when she has big competitions so that she can hopefully change someone’s life by simply
having them visible. Katie says that although training and competing can be more difficult with
diabetes and every single day is a battle, she has learned to never give up. She knows she and
other people can achieve any goal or dream you put your mind to.
“A hero is an ordinary individual who finds strength to persevere and endure in spite of
overwhelming circumstances. Remember everyone is fighting their own battles, but if you never
give up it will all be worth it one day it will all be so worth it. I am not ashamed of my pump and I
will always be happy to share my story”, Katie says.
She wants everyone to know that this month is Diabetes Awareness Month and that if anyone to donate to an organization that strives to find a cure and do more research she recommends donating to the Juvenile Diabetes
Research Foundation (jdrf.org).
October 2021: Vita
Our Warrior of the Month for October is the amazing, Vita (@wheelchairsparkle)!
Vita is both a model and student and is from Slovenia.
She was initially diagnosed with Spinal Muscular Atrophy (SMA) type 2 when she was about two years old.
When she was around the age of 20, a treatment called “Spinraza”, became the first ever available treatment for adults living with SMA in Slovenia.
Around that time, she had to have some tests done and the doctors found out that her initial diagnosis of SMA was actually false. She had even just had an appointment for Spinraza treatment just three days prior. She has been unfamiliar with what her correct diagnosis is, ever since.
Vita says she is not ashamed of her disability and is happy that She can tell her story. She sees being able to help others that are in the same situation as she was/is as a big plus in her life. She is happy to educate abled people that we’re no different - in any aspect. She proudly says that her disability won’t stop her from anything, and neither will yours stop you; you can achieve anything you put your mind to.
September 2021: Michelle
Our amazing Warrior of the Month for September is Michelle!!
Her daughter Kelsey says she is one of the strongest women she knows. Over the last year, Michelle was diagnosed with thyroid cancer. Due to this diagnosis, Michelle needed to have half of her thyroid removed. Since the surgery, she has also developed a few autoimmune diseases such as Hashimotos and Sjorgren’s disease. Although she has never had a high cholesterol or smoked, doctors have also found that she has narrowing in a few of her arteries but were, ultimately, unable to diagnose the cause.
She has managed to navigate both grieving her life before becoming chronically ill and being a medically high-risk patient during a global pandemic! Throughout it all, Michelle was juggling her teaching career and her full-time job running the entire radiography program for her college students, which was later adapted to be online. All of this was happening away from her loved ones and while she was taking care of both of her parents: her father, who was on hospice care and her mother who had dementia and had recently suffered a stroke.
Her daughter Kelsey says that her mom is the true definition of a warrior in her eyes!! She had been incredibly supportive of Kelsey when she became chronically ill five years ago. Now, Kelsey knows it’s her time to be there for her mom as she’s navigating becoming a newly chronically ill person herself.
August 2021: Crea
Our Warrior of the Month for August is the amazing Crea!!
She has Ehlers Danlos Syndrome (EDS) and says that every day is a battle for her. EDS is a rare connective tissue disorder that can affect several areas of the body. Crea was diagnosed at 13 and unfortunately, had to give up every sport that she played due to the condition. She had to completely change how she was living her life.
Although this diagnosis and change can be super hard, Crea tries her hardest to keep a positive mindset and a smile on her face! She is now a senior in high school and a great student. She runs two support groups on Facebook for other people with Ehlers Danlos Syndrome. Crea also shares her experience through Instagram posts/reels and her TikToks. Her TikTok is @_zebra_life_ and her Instagram is @one_dislocation_at_a_time.
Crea is also being tested for other illnesses such as MCAS, POTS, Gastroparesis, EOE, and sleep apnea. She has also been diagnosed with wide-spread chronic pain due to her EDS and her daily dislocations. She has to travel to children’s hospitals for her appointments, has physical therapy three times a week, and works with alternative pain medicine specialists every week. Crea says that she is in pain every single day , but doesn’t let that define who she is as a person!!
July 2021: Makenna
Our amazing July Warrior of the Month is Makenna!!
Makenna is a warrior with chronic and mental illnesses. Although she says these are a struggle she strives to spread awareness of, she believes that both are severely misunderstood especially when they are invisible. Makenna has been diagnosed with IBS, endometriosis, interstitial cystitis, vulvodynia, trigeminal neuralgia, tachycardia, asthma, anxiety, and major depressive disorder.
Makenna was born sick. She had severe stomach issues as well as seizures. When she was in high school, she was diagnosed with IBS-M. Then shortly after graduation within a span of a few months she was diagnosed with endometriosis, trigeminal neuralgia, and later tachycardia. A year later she was diagnosed with vulvodynia and interstitial cystitis. She was recently diagnosed with severe anxiety and major depression disorder as well.
All of these illnesses have affected her life in many ways, so Makenna strives to raise awareness and share her story. Makenna shares her story on her Instagram to show those around her that although she is sick it does not mean she isn’t strong. She doesn’t let her illnesses define her. You can follow this amazing warrior on her Instagram @kenna_rae64!
June 2021: Daniel
Dan is our amazing Warrior of the Month for June!!
Dan is a great activist for trans rights as well as disability awareness! He says he is a ‘medical mystery’ and is currently diagnosed with central sensitization. Central sensitization is a form of chronic pain associated with the nervous system. He also has chronic fatigue as well as a possible undiagnosed functional neurological disorder (FND).
Dan’s symptoms started around two years ago on the exact day of his sixteenth birthday. He went out to eat and throughout the meal, he started to feel excruciating neck pain. Progressing quickly, this pain led to paralysis in his lower legs. Dan was shocked when he realized he had no movement or feeling in his lower legs. That night, Dan was left in tears and panicking about this sudden paralysis.
Fast-forward a few years, now temporary paralysis has started to become a normal thing. It mainly affects his legs although, in the last year, he has started to get paralysis in his arms as well. Dan says that sometimes only one limb can have paralysis and other times it is all of them. In addition to all of this, his joints can dislocate at random times even if it is just from moving slightly. All in all, Dan has a form of chronic pain, chronic fatigue, muscle spasms, and memory loss which can make day-to-day life difficult. He says that some days he is bed-bound and other days he is ready to take on the world!
To help with his medical conditions, Dan uses mobility aids such as crutches and a wheelchair. At eighteen, Dan is still acclimating to his mobility aids as well as needing caretakers to help him with daily tasks. Unfortunately, he and his team are no closer to answering what the cause of his paralysis is. So far, he has been in and out of the hospital and gone through nerve tests, blood tests, CT scans, and MRIs. Since all of them have come back clear, he has been considered a medical mystery.
However, even with everything on, he educates other people about disabilities. He also strongly advocates for trans rights, using his social media to boost awareness and acceptance. In Dan’s spare time, he volunteers with a local scouting group. There he loves to kayak, rock climb, and camp even when he is not feeling very well. His main goal in life is to become a marine biologist and he will be attending university next year to achieve this!! You can follow Dan’s journey on Instagram and TikTok where both usernames are @thedaniel.miles.
May 2021: Brianna
Our May Warrior of the Month we are featuring is the amazing Brianna!
When Brianna was 2 and a half years old, she was diagnosed with a rare disease called Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). Nephrotic Syndrome is when the kidneys scar from proteinuria, which is the excess of protein in urine. Brianna’s parents first noticed that she would wake up with a swollen face, and eventually her whole body would become swollen. Doctors told her parents it was allergies, but she was soon sent to the emergency room to receive her diagnosis. Since there is no cure for FSGS, she was put on numerous medications, including high doses of Prednisone to slow the progression of her disease. She has gone through many experimental treatments, medications, and eventually was put on dialysis at age 12 due to kidney failure. Brianna was also doing plasmapheresis, where she would go into the hospital multiple times a week to get her blood “cleaned out” through a machine and put back into her body. By age 14, she underwent a kidney transplant and immediately, her disease came back. She spent two weeks in the hospital undergoing more experimental medications, treatments, and plasmapheresis. Eventually, she achieved remission with plasmapheresis and an IV therapy called Rituximab that wipes all of your B cells. Now, 10 years later, her kidney function is around 30% - 40%. In the past 10 years, she has had episodes of rejection and recurrence of her disease but has been fortunate to bounce back and have effective, yet grueling, treatments work for her.
Kidney transplants for people like Brianna aren’t necessarily a cure, and she will have to have more in the future until there is a cure or perhaps the invention of an artificial kidney. She is so grateful for all that she went through since it shaped her into who she is today. She wouldn’t change a thing or wish to be a “healthy” person. She’s proud of herself and all others she has met due to chronic illness, and she is currently a chronic illness and mental health advocate. She has gone to Washington, DC and has spoken to U.S. Representatives and Senators about prioritizing the need for funding to find a cure for FSGS. She also meets with new residents coming into Massachusetts General Hospital where she shares what it’s like to have a chronic illness to help educate them on what’s important to know about being a patient. Brianna is so grateful to be a part of something bigger than her and for having found a community within the nonprofit organization NephCure whilst they fight for a cure.
April 2021: Eli
Our warrior of the month for April is Eli!!
Eli is a Type 1 diabetic that was diagnosed on February 13th, 2019. His symptoms actually started the November before. He had been drinking a gallon of water a day which quickly turned into 3-4. Of course, drinking that much water had an effect on how much he was eating and he lost some weight. This is the point that he started to feel too sick to want to move and get out of bed.
Eli knew something was going wrong when he went on a trip to visit his sister and his symptoms were getting worse. He couldn’t walk straight while also having head and stomach pains. The symptoms persisted for the next two days with vision problems being the main problem. However, he decided to still go to school, but had to go home pretty quickly after blacking out in class. Then on his walk home he took a bad fall. He was then taken to the doctor by his mom and after an hour of talking to the doctor she decided to do bloodwork. Although he had been drinking tons of water all day, Eli’s veins were extremely small so it was very difficult to get the blood they needed to run tests. Later that night, after being sent home, Eli was told he needed to be rushed to Children’s hospital in the morning because the diagnosis could be either leukemia or Type One Diabetes. After getting to the hospital and finding out he had a blood sugar of 879, Eli was diagnosed with type one diabetes.
Two years later, Eli is an advocate on instagram for other type one diabetics. He is managing his diabetes and the graphics on his Instagram are super informational and help spread awareness for his chronic illness!! His instagram is @emoneyt1d for those that would love to follow along on his journey!
March 2021: Summer Hope
Our Warrior of The Month for March is Summer Hope!
At the age of 9, Summer Hope was diagnosed with a moderate-to-severe form of Tourette Syndrome. Tourette Syndrome is a neurological disorder characterized by involuntary physical movements and vocalizations called tics. She has dedicated her life to spreading awareness for this very misunderstood disorder, along with the other conditions that correlate with it. She has gone on to making TikToks to raise awareness and has been a part of the Tourette Association Florida Chapter as a support group leader, helps run events, and supports the youth program at the association’s local events.
On the national scale, at the age of 16, she was accepted to become one of five teens with Tourettes from Florida to become a National Youth Ambassador within the Tourette Association. She marched on Capitol Hill and spoke with state senators, staff and her representatives to help pass laws to support individuals with Tourettes. She was also equipped with the tools and resources to go into schools, clubs, jobs, and organizations to give a cue card presentation slide about Tourette Syndrome.
In addition to all of that, Summer also volunteers as a camp counselor at Camp Twitch and Shout based in Athens, Georgia for kids, ages 8-17, with a diagnosis of Tourettes. She attended Camp Twitch and Shout for 3 years as a camper and has now had the opportunity to be a counselor for 2 years. She plans on working with the camp for many more years. Summer is a very creative, funny, optimistic young woman who loves people deeply.
“My mission in life is to never let anyone grow up feeling alone within their disorder like I did.”
Follow Summer on her journey of spreading awareness and changing lives!
February 2021: Alicia
Our February Warrior of the Month is Alicia!
Alicia is a brain tumor fighter and survivor, chronic illness warrior, and living with vision loss. She was diagnosed with a brain tumor at only 6 months old and has lived with it for 21 years. Her tumor has caused her vision loss, as well as chronic illnesses.
Despite these challenges, Alicia seeks to raise awareness by sharing her life on social media and speaking publicly on various topics such as disability awareness, brain tumor awareness, and living with vision loss while being a college student. Alicia has spoken at her college as a member of a student panel, as well as for events with non-profit organizations. She is also an ambassador with the Canadian National Institute for the Blind (CNIB) Foundation, a non-profit organization driven to change what it is like to be blind today.
Alicia is truly showing that a disability does not have to stop you from achieving your goals and dreams. She is an incredible advocate and patient leader. Alicia says that she aspires to be the role model she never had growing up and set forth the example that, despite your diagnosis, you can be successful.
Connect with Alicia:
We are starting 2021 off with an amazing Warrior of the Month named Omma!!
In 2011, when she was 22 and in her final year of University to complete her masters, Omma was silently suffering from intense cramps, severe fatigue, weight loss, diarrhea, and blood in her stool. She said her immediate thought after googling it, of course, was Bowel Cancer. I'm sure we have all been there, Google can make us think the worst! After having a colonoscopy, it was revealed that she had Crohn's Disease.
Within a year of her diagnosis, Omma's bowel had perforated and she needed life-saving surgery and had to be given a stoma. She was initially told that the stoma would be temporary, but after five years of deteriorating health, she was backed into a corner. Having a permanent stoma and her back passage removed was the only option if she wanted a better quality of life. Omma has had her stoma for three years and says that she can say that the doctors were right! She says life is so much better now, but she still reminisces about having lost out on her 20's.
Because Omma spent so much time in pain and months in the hospital with numerous surgical procedures, she feels like she missed out on a time where she should have been building her career and trying to gain financial independence. Omma says that knowing that Crohn's Disease is chronic is a bitter pill to swallow and oftentimes feels like it's stuck in her throat. She constantly has to remind herself to shake off societal expectations and live each day as it comes. Omma tries to remember that her goals don't have an age or time frame and that she is still capable! It may take longer to get there, but it doesn't mean she won't get there!
Omma shares life about her journey on her Instagram account @ostamateforlife.
December 2020: Kaci
Our December Warrior of the Month is Kaci, a 26 year old Multiple Sclerosis warrior.
Kaci was diagnosed in April of 2017 in the process of litigating a motor vehicle accident when her first symptoms began to emerge. "I got into my hot rental car during a lunch break when my fingers, arms and elbows began to radiate with numbness immediately. I saw a neurologist shortly after that who ran some tests, MRI’s and CT scans which confirmed that I was experiencing an exacerbation for Multiple Sclerosis. After the diagnosis I was referred to a neurologist in my city who would be of assistance from there. Fortunately, despite the contrary, my neurologist was very helpful and attentive to my illness. I immediately started a round of steroids to halt the flare up and I was prescribed medications that ultimately did not work for me until I found the one that did."
After all of this, Kaci was a tad bit in denial about her illness and wasn’t sure what was going to happen next or if she was going to live her life with these unpredictable bouts of numbness. Kaci says, "To “escape” my illness, I tried to come up with something to truly keep me busy and distracted. A few odd ideas fell into my lap where I soon fell in love with roller skating. I thought that by doing something so fun, that I actually enjoyed, would help me clear my head about dealing with a chronic illness. "
Shortly after she took up roller skating, and with some serious thinking and considering, she was convinced to start a blog and an Instagram page about roller skating and MS. Kaci says, "It took me a while to put my heart into my page and my blog as I couldn’t see the social acceptance or value of combining such areas of my life where most people with my condition don’t come to a crossroads at. But with a little time, the positive comments and the followers kept coming and kept growing. I soon learned that my chronic illness and learning to roller skate were what made me an inspiration to others, and that I was seen, heard and admired for it. I realized that I was inspiring people to make the best out of their situations, which in turn, inspired myself to see my illness in a different way. I began putting more effort into my social presence and giving others my positive encouragement to embrace the things that make them, them."
Isa, a member of our communication team, has followed Kaci on social media and says she is someone she looks up to while roller-skating with a chronic illness with similar symptoms. Kaci is inspiring and helps her keep continuing to skate after flare-ups and rest days!
Kaci’s social links are @myelinmoxi on Instagram and Facebook and her website is www.myelinmoxi.com.
November 2020: Branson
Our November Warrior of the Month is Branson! Branson's story starts in childhood when his parents began to notice that he wasn't developing as quickly as his peers. Despite their concerns, doctors told his parents it wasn't a problem. When Branson was not walking until he was two, in third grade he was not able to get himself into the car, and he missed many other developmental milestones.
In third grade Branson's mother took him to see a neurologist at Cooks Childrens' Hospital in Dallas, TX and he was diagnosed with Cerebral Palsy and a Chiari malformation type II. Chiari malformation type II is a type of Chiari malformation where both the cerebellum and brain stem extend out of a hole at the base of the skull and touch the spinal cord. At the time, the science and research on the Chiari was non-existent. In fact, the doctor's office called Branson's family about the diagnosis and told them to google it.
Over the next decade and a half Branson battled with a slew of unexplainable symptoms and pain. In his sophomore year of high school his symptoms intensified. He kept blacking out, he went from an AP student to failing his classes, and he broke up with his girlfriend suddenly and seemingly without much feeling or care. No one could explain what was happening to him. Doctors did physical examinations, changed his diet, and even gave him a drug test. After several hospital visits, he was told to go home and hope for the best.
Eventually, Branson's episodes of passing out and his feelings of not caring much about things in his life went away, but the pain and other symptoms stayed. At the beginning of this year many of his old symptoms came back and additionally, he was experiencing widespread confusion. He went from a gifted speech and debate student in high school to a college student that couldn’t put his thoughts together. At the request of his fiancée, he went to see a neurologist at Memorial Hermann in Houston, Texas. After the neurologist talked to him for about ten minutes, he knew two things: Branson was showing failure in his nervous system and he needed to see a neurosurgeon.
Pretty soon after, Branson saw a neurosurgeon who agreed it was time to decompress his Chiari. About a month later they attempted the brain surgery, but as soon as they cut into and pinned back Branson’s neck muscle his blood pressure tanked. They did an emergency closure and intubated him. When he woke up, he was medically paralyzed and restrained with a breathing tube down his neck. No one told him that it was temporary and would wear off in a couple of hours. Branson says this was the scariest moment of his life. At the end of September - after having recovered and gone through vigorous cardiology testing and clearance - they gave the surgery another go and this time they had success.
Since the surgery, Branson has discovered many of his symptoms were linked to the Chiari. For Branson, it was just a matter of waiting for the science to catch up to where we are today. He still has pain and some symptoms, but overall he says he is very blessed. In May of next year, Branson will graduate from the University of Houston with a BFA in Theatre Education and will also marry his amazing fiancée, Ann. After graduation, he is excited to start teaching theatre and plans to pursue an MFA in Theatre Education.