I AM A PROUD:
- SUPER RARE DISEASE SURVIVOR
- PREMATURE BIRTH SURVIVOR
- THREE TIME NEAR DROWNING SURVIVOR
- TWO TIME CAR ACCIDENT SURVIVOR
- MULTIPLE BRAIN INJURY SURVIVOR
- SUPER RARE ADVERSE DRUG REACTION SURVIVOR
- BIG PHARMA DRUG ABUSE SURVIVOR
- EMOTIONAL, PHYSICAL, AND MEDICAL ABUSE SURVIVOR
- MULTIPLE CHRONIC ILLNESS SURVIVOR
I am a believer (Christian), have lived twenty-seven years, and was born at twenty-six weeks as a quadruplet. My life started out vastly different and has been that way ever since. For most of my life I have battled severe OCD, an eating disorder, severe anxiety disorders, depression, multiple types of physical, emotional, and medical trauma, and now PTSD. Currently I live with many systemic issues due to a super rare kind of genetic connective tissue disease with no cure known as EDS (Hypermobile (H-EDS) with all symptoms and criteria of Classical (C-EDS) and Vascular (V-EDS): so I basically have three types of EDS in one. These include: hypermobility syndrome, some scoliosis and kyphosis, insomnia, chronic fatigue, easy bleeding and bruising, blood flow insufficiency, severe adverse drug reactions, fragrance allergy, nausea, multiple concussions, chronic varying pain including neuropathic, Raynaud's Disease, and migraines, seizures, Functional Neurological Disorder, and more. I have survived multiple types of abuse, nearly drowning three times, two car accident involvements where my door was hit and smashed through or which involved t-bones, nearly dying from the eating disorder, countless severe adverse drug reactions and an anaphylaxis reaction to a drug, and a cardiac emergency during a seizure.
I have been through countless years of receiving professional help and multiple forms of treatment for the separate conditions outside of the EDS, before knowing I had it and that it was all connected. I know how debilitating and terrifying it can be to live with multiple mental and physical illnesses, unpredictable day to day symptoms, and how difficult the surrounding stigma, treatment, or unknown knowledge of people can be. I also know how life-changing it is to have real help, understanding, and any ability to start living again. Right now my hope is to become more stable and improve my quality of life. I want to be a voice for those without one and bring more understanding to these illnesses in order to help spread awareness and healing for other people. My content is for anyone wanting to know more or support someone they know suffering - ESPECIALLY if it is a rare and highly misunderstood condition like so many ones I have! I hope to also bring much needed awareness for increased research and help with everything I have been through. While I am documenting my own journey, I strongly desire to bring peace, comfort, and support to whatever the daily battle looks like for you.
I love laughing, finding humor in anything, meaningful conversations, practicing self care and boundaries, and learning how to live with a severe chronic condition while healing from a lifetime of trauma. In faith, I want to make the most of my life while I still can. Most of all, I want anyone to know how much they matter and are loved no matter what they struggle with but especially if it is an extremely rare, unheard of, or vastly misunderstood condition.
You can read my full story that was featured by the largest worldwide EDS organization in my links or section called 'STORY.'
All my love,
- RKD
02-15-25