Warriors

Shyla

Shyla is 23 years old and grew up in Crystal Falls, Michigan. She received her Bachelor's Degree in Social Work from Northern Michigan University and is currently pursuing a Master's Degree from The University of Michigan, which she attends virtually while living with her fiancé in southern Illinois. Shyla has worked in the mental health field for several years and plans to continue pursuing this field in her career after completing her Master's degree. Shyla's Ehlers-Danlos Syndrome has progressed severely through her teen years and early 20s. She is now a full-time mobility aid user and often dislocates and hyperextends her joints up to 20 times per day while also coping with several other medical concerns such as POTS, Trigeminal Neuralgia, Endometriosis, and more. Shyla’s main diagnoses: • Hypermobile Ehlers-Danlos Syndrome (hEDS) • Postural Orthostatic Tachycardia Syndrome (POTS) • Functional Disorder of the Stomach • Trigeminal Neuralgia • Lumbar Radiculopathy • Cervical Radiculopathy • Endometriosis • Insomnia • Chronic Migraines

April

April is a 17-year-old who lives with her family in Roscoe, Illinois. April was diagnosed with Ehlers-Danlos Syndrome at the age of 13. Prior to her onset of symptoms she was a competitive gymnast and a member of her middle school dance team. Her joint pain caused her to begin relying on mobility aids as a high school freshman. By the second semester of her freshman year she was hospitalized due to a medication reaction. That year she was hospitalized 10 times for various symptoms! She has since been diagnosed with POTS, Gasteroparesis, and Mast Cell Activation Syndrome. She relies on a GJ feeding tube for nutrition and an implanted port for daily IV saline infusions. Her struggles with nutrition led to significant muscle loss and she is wheelchair bound at this time. She is attending physical therapy as a means to regain her strength in hopes of being able to walk again. April loves swimming. This is a wonderful way to relieve the stress on her joints and for her to get some exercise. Her other hobbies include: wheelchair dancing, creating artistic make-up looks, and interacting with her online social media followers. You can find her on Instagram at: https://www.instagram.com/April_edsfighter/ April’s main diagnoses: • Hypermobile Ehlers-Danlos Syndrome (hEDS) • Postural Orthostatic Tachycardia Syndrome (POTS) • Mast Cell Activation Syndrome • Gastroparesis • Chronic Migraines

Austin

Austin is the 15-year-old brother to April. His journey began one year ago with a 5 day hospital stay due to severe abdominal pain and weight loss. He is now diagnosed with Ehlers-Danlos Syndrome and Functional Abdominal Pain. He is learning how to manage life as a teen boy while also managing his symptoms. He will soon complete his freshman year of high school. Thanks to his 504 plan, some online courses, and the support of his school staff, he has been able to remain in school. His challenges include learning to pace himself and finding hobbies that interest him that he is able to enjoy with his physical limitations. Austin’s interests include collecting and trading football cards, watching AEW and WWE wrestling, and playing video games online with his friends. He also loves collecting wrestling figures, Funko Pops, and autographs. Austin’s main diagnoses: • Connective Tissue Disorder with Mild Hypermobility • Functional Abdominal Pain with Irritable Bowel Syndrome

Tyler

Tyler is a 12-year-old boy who lives in Bridgman, MI and was diagnosed with Ehlers-Danlos Syndrome (EDS) in November of 2022. Tyler says he had to “basically become a new person” since his diagnosis. He has had to change his way of learning by doing online schooling, taken at home. He has also had to stop most of his physical activities like basketball and baseball and even smaller things like riding his bike. EDS has also changed his way of eating because EDS effects all sorts of organs in the including the digestive system. Because of this he has had to stop eating and drinking lactose. Tyler has most of his problems under control for now by taking medication daily and doing things like daily massages and laying down a lot as well. Some of his main hobbies are video games, hanging out with his family, and playing with his pets. Other than having EDS he also has scoliosis and a trabeculation in his left ventricle which is one of the main values in the heart. Tyler’s mother also has a disability, she has a disease called Myasthenia Gravis, which is a disease that effects the muscles and makes them weaker. This makes it difficult for the family when a single mother and child both need help daily. Tyler’s main diagnoses: • Hypermobile Ehlers-Danlos Syndrome (hEDS) • Scoliosis • Trabeculation in his left ventricle in his heart Mary Hi. I’m Mary Young, a college student from Wisconsin. Thanks for reading my warrior profile. I appreciate Zebra Hearts Foundation because they understand what it’s like to be a young person living with chronic illness. I live with chronic pain which is challenging but I’m figuring out how to succeed despite the challenges. I have Ehlers Danlos Syndrome, Postrural Orhostatic Tachycardia Syndrome (Pots), Migraines, Sleep Disorders and a few other very annoying things! However, I don’t let this define me. I’m in college now and am doing well. It’s really hard some days when I’m in pain and exhausted but I’m making it. I love listening to music, hanging out with friends and drinking coffee. I’m majoring in Communication Sciences and disorders. I hope to become a speech therapist. Mary’s main diagnoses: • Hypermobile Ehlers-Danlos Syndrome (hEDS) • Postural Orthostatic Tachycardia Syndrome (POTS) • Chronic Migraines • Sleep Disorders Ryan Ryan Young is Mary’s younger brother and is in elementary school. He has a great smile and bright mind and has a lot going on with his health! Ryan has Tourette's Syndrome, he has uncontrolled vocal and physical tics which can be alarming for people who don’t know him and embarrassing for Ryan when others stare or react negatively. Ryan is also autistic, has ADHD, and battles anxiety. It’s a lot for a young child to handle and most days he handles it well but some days are just so hard when he feels left out from other kids and feels lonely or ignored. It’s not easy being different but sometimes it can be a super power! Ryan has an amazing memory, is a fantastic actor, is insightful and empathic, wise beyond his years and is very funny. He leads with kindness and shines bright when he is happy. He is so smart! He loves playing Minecraft, Dungeons and Dragons, YuGiOh, drawing, playing piano and drums, and inventing. Reading is a favorite activity as well. Ryan’s main diagnoses: • Tourette's Syndrome • ADHD • Anxiety Hi. I’m Cameron Young. I go to high school in Wisconsin and am excited to be part of Zebra Hearts Foundation. I’ve been dealing with chronic illness my whole life. I don’t actually remember a time when I didn’t have pain. As a toddler I would have trouble walking long distances or going up and down stairs without my legs hurting. By the time I was in kindergarten my parents knew that things were getting worse and this wasn’t just growing pains. Everything hurt. I was diagnosed with joint hypermobility when I was five, meaning joints all around my body were constantly going in and out of place. It’s really painful. When I was 9, I was diagnosed with Ehlers-Danlos Syndrome. I also have POTS, Cold Urticaria (I’m allergic to the cold!), migraines, chronic fatigue and celiac disease. It’s a long list but I’m more than my diagnosis’s. I’m active in my school musicals and plays. I serve in leadership roles in after school clubs. I’m a member of the National Honor Society. It’s a lot harder than it should be most days but I’m really proud of my hard work. I enjoy cooking gluten free treats, playing Minecraft and other games, hanging out with friends and doing brain teasers. Cam’s main diagnoses: • Hypermobile Ehlers-Danlos Syndrome (hEDS) • Postural Orthostatic Tachycardia Syndrome (POTS) • Cold Urticaria • Celiac Disease • Chronic Migraines & Fatigue

Kaitlyn

Kaitlyn is Shyla’s older sister and grew up in Crystal Falls, MI but has been living in the metro Detroit, MI area for the past 5 years. Although she doesn't have an official diagnosis at this time, Kaitlyn's hypermobility has progressed significantly over the past few years. Kaitlyn is an avid dancer, and has even taught country line dancing classes at Inclusion Dance and alongside Line Dancing with Jenergy. She also loves outdoor activities like hiking and backpacking. Unfortunately, her stamina and ability to move freely has been limited by her hypermobility. She now has to take lots of breaks and wear braces on her knees, ankles, hips, and sometimes shoulders to enjoy the activities as she used to. Her braces, mobility aids, and healing items allow her to enjoy these activities without feeling intense pain afterward. Although her need for assistance is limited at this time, she would love to connect with others that have EDS and help spread awareness in her community. Kaitlyn’s main diagnoses: • Connective Tissue Disorder with Hypermobility • Chronic join and skin issues

Lauren

Hi! My name is Lauren and I live in Bridgman, Michigan. I go to Bridgman public schools and my favorite subjects are Math and Social Studies. Some of my favorite things to do are hangout with my friends and family, also I like to cook, watch movies, and go outside. My twin brother, Tyler, has just recently been diagnosed with EDS and it has impacted me in many different ways. I have had to help more around the house and I have to tell teachers and friends how he is feeling. Also Tyler and I can not do as many things together as we could before, like physical activity’s. I will continue to support him, my other siblings, and my cousins - all who have been diagnosed with EDS.

Klayton

Hello, my name is Klay and I am a 24 year old who has minor EDS symptoms but has never been officially diagnosed with EDS or hyper- mobility. The EDS symptoms that have restricted either my abilities or my stamina have been minor joint popping, major ankle popping, and swelling during physical activities. My passion is automobiles and wrenching on cars and as I get older the pain in my joints and especially ankles seem to get worse so watching how I work on cars is very important to my longevity. In addition, My little brother Tyler has officially been diagnosed with EDS and it affects his ability to be active and attend in-person school. Whenever I am home visiting my Mom and siblings I always need to be aware of what he can physically and mentally handle when planning activities. Klay’s main diagnoses: • Connective Tissue Disorder with Hypermobility • Chronic join issues