Faces of Courage. Emma and Eleanore

Hello! I'm Emma Belanger. My sister Eleanore and I live in South Carolina. Even though we are often mistaken for twins, we are almost three years apart in age. I am 21 years old, and Eleanore is 23 years old. We look very similar, and we are also very alike medically. We have both struggled with our health our entire lives. We were diagnosed with Joint Hypermobility Syndrome as young girls, but it wasn’t until Eleanore was diagnosed with Ehlers-Danlos Syndrome at the age of 18 that we began finding answers for the many symptoms and deep pain we were suffering from. Eleanore’s geneticist wanted to see the rest of our family, and my mom and I were diagnosed with EDS soon after. Since our original diagnosis of EDS, we've both been diagnosed with Postural Orthostatic Tachycardia Syndrome, Tethered Cord Syndrome, Cranial Cervical Instability, Adrenal Insufficiency, and Mast Cell Activation Syndrome. I have also been diagnosed with Chiari Malformation and Intracranial Hypertension, and Eleanore has been diagnosed with HypoKPP. Because of Ehlers-Danlos Syndrome and the many comorbid issues that come along with it, we deal with joint pain and dislocations, headaches and migraines, dizziness and syncope, gastrointestinal issues, and extreme fatigue. Eleanore has episodes of weakness and paralysis caused from HypoKPP. I deal with extreme pressure headaches caused by Intracranial Hypertension. Because of these many disabling symptoms, we both had to give up playing cello after more than ten years of practice. We've needed a lot of treatment, much of it surgical. I've had 11 neurosurgeries, 4 of them were on my brain. Eleanore has had 6 neurosurgeries. We've had a total of 4 arm surgeries, with one surgery on each of our arms. Counting other surgeries related to issues with EDS, we've had a combined total of 23 surgeries. Unfortunately, none of these surgeries are a cure for Ehlers-Danlos Syndrome. Our connective tissue will never fully hold our bodies together. This means we will continue to need surgical intervention and other therapies for the rest of our lives. Ehlers-Danlos Syndrome is an under-diagnosed condition. Not many doctors know about it or understand it. We often need to travel out of state to see doctors who specialize in our conditions, and we spend much of our time traveling for doctor appointments, treatment, and surgery. This is financially, mentally, and physically taxing. We rarely have the chance to just relax and have fun. The Option EDS retreat is a chance for us to breathe and spend time with others who completely understand our struggles. We first met Monica on one of our many trips to see a specialist in another state. We are truly grateful for her friendship and the support she’s given our family. Her vision for Option EDS will give us the opportunity to spend time with some of our best friends and a chance to meet new ones. It's not an exaggeration to call our EDS community family. Thank you for donating to help make this possible for us.