My name is Emily, I’m 22 years old and live in Michigan. My story writes very similar to the other girls who have shared theirs, as I too have Ehlers Danlos Syndrome (EDS) and many of the associated conditions that tend to come with it. During the first 9 years of my life I was a completely healthy, active, and energetic child. Whether it be playing in the waves of Lake MI or at home with my family, I loved to spend time outside and always have been one for adventure. When I turned 9 everything changed; I began to have headaches, neck pain, fatigue, dizziness, and other weird and neurological-in-nature symptoms. I was soon diagnosed with Chiari Malformation, and as my symptoms continued to progress so I was homebound and in excruciating pain, we became more and more desperate for answers. After over a hundred appointments in Michigan with no help, my family and I were led to some wonderful doctors and neurosurgeons on the east coast. It was then found that along with Chiari I also had EDS, a Tethered Spinal Cord, Dysautonomia, Mast Cell Activation Disorder, and eventually Cranio-Cervical/Spinal Instability.
At that point we thought we had a decent idea of what we were facing and what that meant for my life. But the reality was we had no idea how relentless EDS could be. One of the only ways to manage some of these conditions is with surgical correction, so since then I’ve had my brain, spinal cord, heart, and spine operated on numerous times. Each surgery is necessary and helpful, yet the day to day living with EDS remains a fight. Looking back 12 years and 26 surgeries later, it’s so cool to see how in some of the darkest times God still finds ways to put light into my life. One of the biggest ways that He has done that is through people. I have met and come to love the most amazing people through all of this. My closest friends are those who live through the fire that is EDS too. We have lived together in Ronald McDonald Houses and hospitals, had back-to-back surgeries, recovered together, laughed together, prayed together, cried together, and lived what parts of our crazy lives we can together.
When Monica shared her vision of the EDS Retreat, and I thought about the stories of those who will be there, it gave me goosebumps. We are all going through the same things and we have all experienced nearly identical surgeries, treatments, medical trips, pains and frustrations. To be able to come together as the community we are, as friends and not patients for once, and just say we are “taking a break” from our crazy lives and all that goes on in them may be the most healing thing we could experience. Nothing about living with EDS, chronic pain, and a fused spine is easy. All we can do is take it one day at a time and never stop fighting to live the “most well” lives we can. One of my favorite quotes recently is one by Mother Teresa that says, “let God do with me whatever He wants as He wants for as long as He wants, if my darkness is light to some soul.” Looking back over all the situations and people that have been placed in my life over the years, I am thankful for the ways in which darkness has repeatedly made the moments of light even sweeter. The Option EDS Retreat is definitely one of these “moments of light”, and I am so thankful to get to share in it!
I’m Donna and my 21 year old daughter is Kendall. I’m so proud to call her my daughter. She has fought through the unfathomable, never giving up and always keeping a positive attitude. I also have a 29 year old son, Ryan and 13 year old daughter, Karly. One of the hardest parts of our EDS journey is leaving my husband and children home in Texas while Kendall and I travel all over the US for medical care.
Nine years ago Kendall was diagnosed with a neuropathic pain condition, Complex Regional Pain Syndrome. Her diagnosis didn’t explain many of her symptoms so the next year we were still searching for answers. It was devastating to have no one to turn to for answers. It was also overwhelming to know that not one of the 50 doctors she saw that year had a clue how to help her. Most of those doctors didn’t even believe anything was wrong with her. They told us it was all in her head. Eventually Kendall was diagnosed with Ehlers Danlos Syndrome. Getting the EDS diagnosis tied many symptoms together, but it still left us with a network of doctors who didn’t know what to do. Many doctors never learned about EDS, some never even heard of it. Since then she has been diagnosed with many other accompanying conditions including Dysautonomia, Chiari, Tethered Cord Syndrome, Intracranial Hypertension, Mitochondrial Dysfunction and Temporal Lobe Epilepsy. Kendall has had over twenty surgeries and lived through an abdominal aneurysm that should have taken her life. Our amazing God miraculously kept her alive and gave her a strong will to survive. She now has multiple spinal fusions, three stents in her brain, one shunt in her brain, and one shunt in her spine.
The beginning of this journey was isolating and lonely. It was usually just Kendall and I traveling all over the country for treatment while the rest of our family was home trying to keep up with work and school...with life. We spent many months in hospitals far from home. However, because of all this, Kendall and I made the most incredible, wonderful friendships along the way. We met our EDS family in waiting rooms, elevators, doctors offices, and even on an airplane. This family of fellow warriors is what keeps us going. This extended family knows us. Gets us. Loves us. We have made lifetime bonds and created extended support systems. I can have a team of moms praying for Kendall at any given moment! Medicine can’t provide what these bonds can. My favorite thing to witness is Kendall reuniting with fellow EDS warriors. It is the best feeling in the word to watch her connect with some of the few people in the world who can truly relate to her life. Despite how very ill and fragile these girls are, there is always laughter when they are together. This is priceless. I am so grateful to be part of this network of moms and daughters who formed deep relationships in hospitals, hotels, and Ronald McDonald Houses! Nothing compares.
Over the years we have all talked about how great it would be to spend time with each other when a surgery wasn’t involved and now it is happening! We are so grateful that someone we have never even met chose us to be included in this retreat. This is truly a dream come true. Kendall and I are both very honored to be invited. We are blessed to be joining old friends and meeting new friends; extending our EDS family a little further!
My name is Emily. I am 24 years old. I live in North Carolina, and I’m the oldest of three girls. I enjoy doing crafts and being artistic. I love to travel and sight see, something I wish my body would allow me to do more of. I hope to live in Florida someday, where my body seems to feel the best. I have four small dogs who are my world and won’t leave my side when I don’t feel well. They are my constant companions.
I was a “normal” child, but complained a lot of random aches and pains. As they were inconsistent nothing ever became of them. I continued to take dance lessons, play on the school soccer and volleyball teams and would play outside with the neighborhood kids until dark. So why was anyone to think anything was abnormal? I was a sophomore in high school before anything became of my daily symptoms. I was diagnosed with chronic acute Mono two weeks before Christmas break and was kept home until after break. On the first day back for second semester I got lost at school. Yes, lost, as in I didn’t know where I was, why I was there, or who was around me. I was found wandering around the halls after all the tardy bells had rung. I got lost in a place I had attended an entire year and a half already. It made no sense. After failing my primary care physicians neurological exam, I was sent for an MRI. As much as we all tried to think positively while waiting, it was hard not to immediately think the worst, as my sister had Leukemia at the age of five. The MRI tech asked us to wait and then to speak to the doctor on the phone. It’s never a good sign when asked to wait and the doctor wants to talk to you himself. Fortunately, it was not Leukemia, but he did say four words that changed my life forever... “You have Chiari Malformation.” After searching and visiting many neurologists and neurosurgeons all over North Carolina and the Southeast, we finally found a neurosurgeon in Charlotte who agreed that the size of my herniation did not indicate the severity of my symptoms. He agreed that surgery would be beneficial, so he said he would perform Chiari decompression surgery. About six months later after surgery, my Chiari symptoms were in full force again, so he ordered a repeat MRI. It turns out a bunch of scar tissue built up, but he did not know why. He then decided to do a surgery called duraplasty on me, but again my symptoms returned a short time later, and he didn’t have an explanation as to why. So the search for another opinion began. We searched for more opinions, and it was clear that most thought I had the surgery and I was “cured.” There is NO cure for Chiari and the size of the herniation does not matter. After attending a Chiari walk in Georgia, the closest one to us, we found out about a neurosurgeon in Maryland who could possibly help me. We couldn’t imagine traveling out of state for medical care, but with my rapid decline, we decide to make an appointment to see him. He believed that there were more issues as to why I was hurting, and as to why my symptoms kept returning. We spent two hours going over my symptoms, scans, and medical history. He diagnosed me with Basilar Invagination and Craniocervical Instability. At that time in 2011 my clivo-axial angel was 99 degrees, one of the very worst he had seen at that time. It is supposed to be between 150 and 165 degrees. He gave me an aspen neck brace and told me not to remove it until after he performed occiput to C2 fusion. I couldn’t believe we finally found a compassionate neurosurgeon that believed I could still be hurting and having daily issues, even after having Chiari decompression surgery and duraplasty surgery. It was a huge relief.
During this initial consult he referred me to a geneticist in Baltimore, Maryland to be evaluated for Ehlers Danlos Syndrome (EDS). The geneticist did diagnose me with EDS type 3 hyper-mobility. After seeing many other specialists I was diagnosed with many other co-morbidities: Intracranial Hypertension, Mast Cell Activation Disorder, Gastroparesis, POTS, Tethered Cord Syndrome, Thoracic Outlet Syndrome, Interstitial Cystitis, Neurogenic Bladder, Dystonias, Left Temporal Lobe Seizures, Adrenal Insufficiency, Cerebral Stenosis, Spinal Instability and Degenerative Disc Disease. It all started to make sense, and the puzzle pieces were coming together, so to speak. EDS was reeking havoc on every part of my body and even though I was born with this genetic condition, it took fifteen years to figure out what was wrong. I had my first surgery in Maryland in December of 2011 and then started to tackle the rest of my body systems one by one that were having issues. During this time I clung to the verse, “When I am afraid I will trust in you.” Psalm 56:3. I am still under the care of all of the physicians mentioned above as well as another one in Pennsylvania. I am fortunate to have a primary care physician at home who works diligently to help me. Having so many surgeries, procedures and medical testing at such a young age, made my life very different from my peers which made it hard to fit in. Instead of football games, prom, dances, homecoming, and high school, I was bedridden in between appointments and surgeries.
Monica and I just recently met in person, but I feel like I’ve known her forever as we send handwritten notes of encouragement and hope to each other. Monica’s #pentopaper always comes at the perfect time. My friends have become those who are on the same journey as I am. Most of my really close friends live of state and travel to see the same doctors as I do. We stay at the same places and see each other in waiting rooms. We get each other. We understand exactly the pain the other person is going through. It has helped to have people in my life who fully understand what it feels like to live this life physically and mentally. I have made life long friends from this medical journey and I’m forever grateful for them. We sometimes go days to weeks without talking or texting, but we know we are always there for one another, and when we do catch back up, it’s like no time has passed at all. Out of all the hard and challenging things this life has handed me, it has also given me some pretty wonderful friendships and opportunities such as Option EDS-The Retreat. I am looking forward to spending a few days away from reality with those who truly understand what living life with EDS means. It will be so nice to sit with the sun shining on my pale skin and exhausted body and just relax with little worries or responsibilities. Thank you, Monica and everyone who has helped make this retreat possible. I am excited to be a part of the first Option EDS-The Retreat. “The Pain that you’ve been feeling can’t compare to the joy that’s coming.” -Romans 8:18
Hi, I'm Rachael. I'm 21 years old. As many of the girls who have shared here, I have EDS and its' comorbid conditions including mast cell disorder, spinal instability, POTS, adrenal insufficiency, a blood clotting disorder, seizures, and intracranial hypertension. All of which present their own unique challenges.
When I was a child, we didn't know I had this genetic disorder. I often had "growing pains" and daily stomach issues (we'd later find out are from mast cell.) Other than that, I went about my life as a very active child and teen. I hung out with friends, danced constantly and enjoyed ballet immensely. I pushed through a lot of pain to dance. Often people say they regret their time doing things such as dance with EDS, but I personally do not regret a moment of it. It helped make me who I am, taught me valuable lessons, strengthened my relationship with God, and it will always be a part of me.
Around age 13, I began to get dizzy, had a racing heart, tremors and blacked out easily. I was eventually diagnosed with POTS. After some time, I was diagnosed with EDS due to pain throughout my entire body. I was given a few medications and told to do PT. I didn't think too much of it and wasn't going to let it stop me.
Shortly after this diagnosis, I started to experience extreme headaches daily that nothing relieved, along with spinal pain and very odd neurological symptoms. My geneticist for EDS at Cincinnati Children's soon sent me to a specialist in another state for surgical intervention. They suspected severe issues outside of their realm of expertise. We knew this was going to be a roller coaster based on my many diagnoses from the neurosurgeon I saw. I quietly prepared myself for a sort of war- one only God could fight.
Although I appeared "healthy" to most, I was smiling through pain while my body was falling apart inside. With vital arteries at risk and a compressed brain stem, I could not put surgery off. I have undergone surgeries for a spine that was not stable enough to hold me together on it's own, as well as a brain with way too much pressure on it. Every part of my body is unusually loose, even for someone with EDS. Many people do not know this, but it has only been 3 years since my first surgery. I've had over 20 surgeries since then as issues have needed quick attention. We've had to piece me back together so I can safely function.
One of the most troubling illnesses I have is high brain pressure, because of the indescribable pain and symptoms it presents. I began to struggle with this around age 15, but it wasn't until last year in a very dire situation I started receiving treatment for this condition. I am still in the midst of this now, with yet another brilliant specialist. Unfortunately, a severe condition ignored far too long by doctors is taking quite some time to control.
With a fully fused spine, stent and shunt constantly draining my brain, I'm slowly discovering how to live and be the "new me." This journey is not easy, but I've met the most incredible souls along the way, many of whom are my best friends. I treasure my friendships with these girls who have been there for me, many of them quite literally. The ones who aren't afraid to love the broken and sit in the unknown with you? These are true friends. We've spent more than enough time together in waiting rooms, pre-op, hospital rooms, and Ronald McDonald Houses. We always joked we should be on a beach somewhere instead. Monica is making this a reality and I am grateful for the invitation to go relax with our zebra tribe.