Q: Tell us about you?
What health conditions do you have and how have they affected your life?
My name is Ava, I'm a 17 and a college freshman. I'm an member of several fandoms, with a passion for art and attending concerts. However, I have had several health challenges throughout my life. I've been diagnosed with dysautonomia, Hypermobile Ehlers-Danlos syndrome, gastroparesis, cyclic vomiting syndrome, and Scheuermann kyphosis. These diagnoses have come at different points in my life, each presenting its own set of challenges.
Living with these conditions has brought about a range of symptoms, including persistent nausea, episodes of vomiting, joint and muscle pain, joint subluxations, mobility issues, dizziness, heart palpitations, and even fainting.
If you're interested in learning more about Ava's diagnosis' please click the boxes below for further information:
Ehlers Danlos Syndrome
Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.
Cyclic Vomiting Syndrome
Kyphosis is curvature of the spine that causes the top of the back to appear more rounded than normal. abnormally shaped vertebrae (Scheuermann's kyphosis) – if the vertebrae don't develop properly, they can end up being out of position.
Q: What has been your biggest challenge, or hardest thing you have had to come to terms with, since your diagnosis?
The most challenging aspect part of my life has been coping with my daily symptoms. It's a struggle to do activities I enjoy, such as hanging out with my friends. Sometimes I feel like I'm missing out on life.
Q: Despite your challenges, what keeps you going and brings you joy?
My family, friends and pets bring so much joy into my life. I have three adorable cats, who are the best companions anyone could ask for. My friends are incredibly understanding and supportive. The fandoms I am a part of and my passion for music also adds so much happiness to my life.
Ava finds comfort in her cats and friends!
Q: What is an achievement your most proud of since being diagnosed?
Going to college and graduating early!
Q: Whats one piece of advice you have carried with you throughout your journey?
“don’t give up in your battles”