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.
They are two words we all long to hear.
I never imagined the response to this little dream of gathering zebra family for a retreat would be so great. Oh so many of you in our EDS community are longing for something just like this. You've been asking how you can come, when will there be a next one and if you can be on a waiting list.
Over the last decade I've learned the unmatched beauty of doing small things faithfully with big love. The support for my family, my Danica and I rippled and became an ocean of access to care and the most well life possible. My response has always been to do what I can with what I have where I am. And to boldly ask, believing all things are possible.
Seventeen women are invited to meet in Corolla, North Carolina, on the beautiful Currituck shores in mid May. My heart's desire is for the first gathering to feel like I am inviting them into my own home. I want them to settle into a simple hospitality and safe community and find rest. This is why the first retreat is "by invitation only."
God is in the details. I traveled to visit the retreat house in February. Walking the rooms I prayed for each mom and daughter by name. I watched the sun rise on the ocean and set on the sound from the great room where we will all gather. This would not be happening without Healing Hearts Respite Foundation generously donating the home for our week and your donations to help cover the cost of food, linens, special gifts and surprises and travel expenses. We are half way to our fundraising goal. Thank you!
Please circle this week on your calendar. Please pray each one of us who are hoping to attend. Often those of us with EDS make plans only to have our bodies betray us. Most of the young ladies invited have just gone through surgery, are having surgery now or are heading for treatment. I will be sharing their beautiful faces and stories here over the next few weeks. You're invited to be inspired and challenged while peeking in the virtual windows of our beach house. Join us.
"True hospitality is giving people a place to be when they would otherwise be alone."--Shauna Niequist
Hi there. I'm Christina, I'm 22 years old. Like the other girls who will share their stories here I have Ehlers Danlos Syndrome, aka EDS. My journey with EDS started around the age of 10. Before that I had always presented as a fairly healthy kid. I was a gymnast and thought little of my flexibility, but nearing my 11th birthday it became pretty clear that something else was going on. Unfortunately it wasn’t until I was 16, and had already undergone brain surgery for a Chiari malformation, that we figured out the root of my pain and many accompanying conditions.
I first learned about EDS while watching an episode of 'Mystery Diagnosis.' I made an appointment with a geneticist who confirmed I had the connective tissue disorder. Imagine the surprise of my primary care physician who had insisted my whole life that I was just a hypochondriac! After diagnosis my pain and wide-spread symptoms began to make sense. Many more surgeries were required. I now have a fully fused spine, a stent in my neck, and ultimately I have become dependent on a feeding tube and a port in my chest for nourishment and hydration. But I consider myself one of the lucky ones. I have managed to put together a really knowledgeable team of doctors and therapists. I am determined and constantly fighting to build back my strength so I am able to speak up for those in our community who aren’t as lucky.
When I was diagnosed I had a really hard time finding people my age who I could relate to and were going through similar struggles. About 2 years ago I started to share my story and my life online via my YouTube channel and Instagram. The amazing community of support that's come from the internet is more that I could have ever imagined. There were so many other people out there just like me just waiting to find that connection.
My big picture goal is to be able to get back to school again someday, I would love the chance to help people on a larger scale. But in the meantime I opened up a small etsy shop which has actually done quite well. Art and creating is definitely what gets me through. My mediums have had to make quite a few changes over the years as my abilities have changed, but I like to look at that as a positive. It has been fun trying out different hobbies. Currently I’m on a crochet kick! Life moves on, and I count my blessings daily. Two of my favorite mottos are, “It is what it is” and “We do what we gotta do.”
I am so touched to be invited to the “Option EDS” retreat and absolutely can not wait to on the beach with so many dear friends. It's the dream we always talked about coming true!