In the spring of 2010 my Danica Jean's first Chiari decompression was failing. Her sweet little head was falling off. She was in paralyzing pain. She was barely two and a half years old. I began writing about our story on Team Danica. There was some kind of search engine keyword stuff happening and Pam Fenner found us. She was the first hero helping untie the impossible knots of our hard.
In October, 2016, Danica was having another dangerous brain and spine surgery at Johns Hopkins in Baltimore, Maryland. Pam was having her own complicated surgery at Georgetown. Danica's lung collapsed from the painful breathing where they'd planed her two ribs for bone fusion material. Just five weeks earlier I'd had another cervical fusion. I was desperate and suffering. I was afraid. I was alone. I wouldn't leave Danica's side. Pam was released and instead of having her dear husband drive her home to Richmond she asked him to drive her the opposite direction to find us. She showed up.
Pam wrote the following about her family and their journey and what this retreat week means to them. There is no one more deserving than Steve, Pam, Roman and Eden. Take a moment to get to know them and be inspired.
There is an incredible overwhelming feeling that consumes me each and every time I am asked to share our story. Where do I start and where do I end? The question enters my mind if others would even believe the story because it sounds made up. Things are awful enough when one member of a family lives with a chronic medical condition (enduring surgery after surgery), but what does life become when it is three of you? There is no end in sight when three of you are affected by Ehlers Danlos Syndrome and its related conditions. The heartache goes on and on, as EDS rears its head at just about every corner. EDS involves a lifetime of digging deep and grabbing onto something much bigger inside of you. It’s having gratitude for waking up another day. It’s living in each moment because you’ve learned how precious life truly is. It’s knowing all too well that even though you just had a risky life saving surgery, that the next thing is waiting to take you down again, and perhaps even worse this time. Your life becomes all about weighing risks and life as you knew it no longer exists. You quickly gain a rolodex of specialists and are thrown into the ring of a medical circus, that requires arming yourself with knowledge, while researching to the ends of the earth, just to stay alive. It’s like owning a car that is a lemon, constantly taking it into the shop for repairs. Surgeries become ”bandaids,” as there is no cure for what you were born with (faulty collagen that makes up the entire body, every organ system, and your blood vessels). Even worse, you unknowingly passed EDS and its related conditions onto your two children, as you didn’t know you had it because you weren’t affected until midlife. There is no handbook that you can peruse that will help you figure out how to play the cards that you’ve been dealt and you are constantly in a state of attempting to have your failing body put back together.
Chiari, Intracranial Hypertension, Tethered Spinal Cord, Spine Instability, skulls that are bobble heads that have needed to be attached to our necks, heart valve problems, vascular malformations in the lungs that wreak havoc, and life threatening adrenal insufficiency, are the conditions in addition to Ehlers Danlos Syndrome, that we live with daily. All of these things are a mouthful and way too much to get into, but nevertheless, have caused the need for a lot of neurosurgeries in the three of us. Many of which have had to be repeated. Having these surgeries once is bad enough, but having to repeat them is like living a bad dream. We have scars all over our bodies from the surgeries that have kept us alive.
Eden presented as a one year old who had great difficulty with balance/being upright and with walking. I was going downhill fast with my own extreme problems at the exact same time while trying to get Eden the help that she needed. Eden eventually had a four hour sedated brain and full spine MRI, which would wind up being a huge part of the answer to what all three of us were suffering from. She had two neurosurgeries as a toddler. Around that time, I had my first. We had no indication back then of what was to come and that neurosurgeries would become as commonplace in our house as going to the dentist to have our teeth cleaned. EDS took over Roman’s life his sophomore year of high school. The
bottom fell out and he wound up having ten surgeries before graduation.
I always say that EDS (and its related conditions) is both a blessing and a curse. The curse part is obvious. The blessing…my kids know the meaning of life at 13 and 18 years old. They know what it’s like to suffer from an invisible illness and that what you see on the outside is often not a good indicator of
what could be going on in someone’s life. They know that a smile can hide pain and how important it is to be kind and understanding for that exact reason. Eden started drawing at a very young age to escape her pain and the stress of surgeries in her life. She developed into an incredible artist over the years because of her pain, and has a true, unique gift. Roman feels like God has used his greatest pain and worst circumstances to help others. He is on a pre-med track in college, in hopes of becoming a doctor who understands and can help EDS patients. Over a year ago, I was asked to join the Board of Directors of a foundation that continues to raise awareness for these conditions, while raising funds for research, to ultimately find a cure. Every bump in the road has led to something bigger and better. We have seen the hand of God in just about everything. We have witnessed miracles. We have learned to see with "eyes of faith instead of eyes of fear.” Our journey might not be an easy one, but we are infinitely more equipped to be positive forces in this world because of our story.
Having the opportunity to embark on Option EDS – the retreat, is an unimaginable gift! It’s very difficult for us to get away and enjoy time together, since one of us is more often than not, undergoing or recovering from a neurosurgery or procedure. There aren’t many times when we have an opportunity to sit back for a week and only focus on living life to its fullest. It’s a crazy life, but we have been blessed to meet several other EDS families along the way. We have created strong bonds with many of them and have come to rely on each other in so many ways. We always imagine how wonderful it would be if we could spend quality time together outside of hospital walls. Instead, we persevere through the unthinkable and “vacation” in hospitals together, showing up for each other time and time again on the darkest days. The opportunity to embark on a relaxing EDS retreat is something that I still have not been able to really wrap my brain around. It is a huge blessing to sit, cry and laugh with people who understand exactly what it is like to walk in your shoes. Sometimes no words need to be exchanged. To spend a week with other EDS families, will be therapeutic on so many levels. Naturally, most people’s hearts go out to the patients and it’s easy to forget about the husbands/fathers whose lives are crashing down around them, watching their families suffer while they attempt to hold it together, continuing to work, hold down the fort, take care of the pets and house, pay the bills, and often for all of those exact reasons cannot be at their loved one’s bedside. They suffer, just like the patients, but in different ways that most don’t even think about. I am especially excited for these men to attend Option EDS - the retreat.
My dear friend Monica, founder of Option EDS- the retreat, and her family, continue to brave all of the hardships that EDS impresses upon them. Monica and I became quick friends when I stumbled across her blog years ago. We had so much in common. Monica has encouraged us, supported us, prayed for us, visited us in the hospital, mailed so many cards and care packages to us, and has been a gift from God to us on this journey. She is an angel in my life and has shared with me her dream over the years of creating an EDS retreat. To see this dream come to fruition and for my family to actually be invited to be a part of it, is a great reminder of something that Monica has said to me for years…"
See, I'm Doing a New Thing
It's another story for another time. The empty space here in 'ramblings' is almost a year of big personal life challenges and changes. I had three shunt surgeries following last year's retreat, and God made the way for my family and I to move to Tucson, Arizona last August.
I've seen miracles.
This desert life has made me more well in so many ways, and it's stoked the fires of my dream to build a non-profit here and run a full time respite house for my EDS warriors. This is hard work with many steps. In the meantime I'm being called to continue Option EDS - the retreat in Corolla.
The retreat will look different this year. Four families are invited as well as a very special women who is an angel to our community. Out of the seventeen people there are seven children and three mamas with EDS. I am going to be sharing the stories of these families over the next few days.
If you are reading this and you or someone you love lives with EDS and the many comorbid conditions it brings know I wish I could invite every one of you. I want to open the door wide and give a place to exhale in all the hard. I believe this bigger place will happen. I believe there will be more rooms and more funds and bigger community. Sign up for updates here and hold on.
Many of you gave and supported the first Option EDS - the retreat in Corolla, NC last May. Your kindness made all the difference. I NEED YOUR HELP AGAIN. The beautiful beach retreat home, Sandy Toes & Salty Kisses, is once again donated by Healing Hearts Respite Foundation. We are hosting four EDS families the week of May 25th-June 1st.
Please consider donating to help us:
-Give the couples each a date night at The Blue Point
-Give the families a grocery stipend to help with food costs for the week
-Give the group a memorable low country boil as a fun community dinner the last night of the retreat
-Rent beach chairs and umbrellas for comfortable days by the ocean
-Provide other general household needs like paper products, detergent and bottled water
You can easily donate through this link to Healing Hearts secure donation page. All donations are tax deductible.
We are expecting miracles!
"...Until recently I barely even knew the signs of welcome, like the way a person plopped down across from me and sighed deeply while looking at me with relief: a shy look on someone’s face that gave me time to breathe and settle in. I didn’t know that wounds and scars were what we find welcoming, because they are like ours. Trappings and charm wear off, I’ve learned. The book of welcome says, Let people see you. They see that your upper arms are beautiful, soft and clean and warm, and then they will see this about their own, some of the time. It’s called having friends, choosing each other, getting found, being fished out of the rubble. It blows you away, how this wonderful event happened—me in your life, you in mine. Two parts fit together. This hadn’t occurred all that often, but now that it does, it’s the wildest experience. It could almost make a believer out of you. Of course, life will randomly go to hell every so often, too. Cold winds arrive and prick you; the rain falls down your neck; darkness comes. But now there are two of you. Holy Moly.” ― Anne Lamott, Small Victories: Spotting Improbable Moments of Grace
For what seemed like much longer than four years I journaled and prayed and waited. All the ideas swimming inside my head and my heart and the eventual planning and fundraising and executing became reality last week at the first Option EDS (the retreat).
I hoped it would be so many things, but I mostly wanted the women invited to arrive and feel welcome. We use this word often, and it loses meaning in certain contexts, but we all know what it feels like when it happens to us.
Healing Hearts Respite Foundation gave us the perfect space to use, a beautiful beach house in the Outer Banks of North Carolin set on a hill with views of the ocean and the sound. In a meeting only God could orchestrate I found Kim Sproles, Founder and Director of Healing Hearts, last year through an email exchange while I was first stepping out on the waters of faith. Her "Yes!" became God's "Yes!"
Last Monday night the mamas and daughters were allowed to check in after 2 pm for a day of rest and recovery after long travel. They came from as far as San Antonio and Boston. I knew what an act of hope and faith their journeys to Corolla were. They were trusting me. The first night was perhaps my favorite. Before the retreat officially began these beautiful souls entered into a home prepared perfectly for them. After finding their rooms, discovering the first of many gifts and touring the gorgeous house the girls and moms put on their bathing suits and gathered by the pool. Janet and Lori, two dear saints of hospitality, served a nutritious feast for the eyes and the body. Kim and Hope, beautiful souls from Healing Hearts, joined us for an introduction and a glimpse into what their generosity was birthing.
I love Jesus' call to retreat in Matthew 11:28, "Come to me, all you who are weary and burdened, and I will give you rest."
This was the Spirit gently ushering the guests in.
Later in the week Christa Wells joined us for a private house concert. She sang her song "You've Got a Home." I chose it for the set list, because it is was on my retreat dreaming playlist. The generous feeling of welcome and home was central to everything else I prayed for. It's not something I can transfer from there to here. You will just have to trust me when I tell you we settled in quickly and never wanted to leave.
Put your feet up and stay here awhile. I will be writing all week and sharing so many photos!
Faces of Courage. Sydney
Hello. I am Sydney. I am the youngest of the group. Just like the other girls you've read about here I have Ehlers Danlos Syndrome along with some of the other co-conditions that can go along with EDS. I was about 11 when I started having really bad back and leg pain. For a while we couldn't pinpoint what it was. It wasn't until my mom (who has Ehlers Danlos and other co-conditions as well) was being tested for Tethered Cord Syndrome that she realized this might be the cause of my problems. So a week before my 13th birthday we met with my mom's neurosurgeon who deals with complicated EDS patients to see if this was really the cause and if this was my next path in life. He informed us that there was much more going on than we thought. I did have tethered cord but it was "hidden" meaning you could not see it on an MRI. I also had a small syrinx, scoliosis, and several levels of my spine that were unstable, but he thought the tethered cord was the most crucial at the time. However, he could not perform surgery on anyone under the age of 14. He suggested we go and find another doctor because he felt a year was just too long for me to wait. For the next year we searched for a doctor to detether my cord, but most said that I was faking or it was all in my head or my case was to complicated for them. I ended up in a wheelchair, and we went back to the my mom's neurosurgeon. Since it was only a month until I turned 14 we scheduled surgery for the week after my birthday. I thought I would bounce back, get to being a kid again and run around the yard with my sister and the dogs. I soon learned that was just not the plan for me. I had to learn how to be a kid with limitations. I went from running to falling, from walking to being in a wheelchair, then using a walker and back to walking on my own again. I was learning how to live with this new normal.
That's when the pain began to get worse. I started losing feeling in my legs again. Not knowing what was happening we went back to Maryland to see if we could figure it out. My entire spine was unstable. My neurosurgeon informed us that Maryland had changed a law and at his hospital he could not operate on anyone under the age of 18. I was only 14. He gave us a couple of referrals, but all of them said I was either too complicated or it was outside their wheelhouse. For 3 years we have found doctors who will help manage and maintain my health. We are waiting until I am 18 to finally have surgery to stabilize my spine.
This has been a long and twisted journey with lots of doctors and lots of diagnoses. I know it's not over and there will be more surgeries in the future. But that's okay, because I know God put this path before me for a reason. Along the way the greatest gifts to come out of all of this hard are the friendships we've formed with others who are going through the same things and even more. I can't wait to spend a time with my friends on the beach! I have never looked forward to something so much in my life. I am very thankful for Mrs. Monica and everyone who is helping with this. retreat.
Faces of Courage. Emily D
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!
Faces of Courage. Emily
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
Faces of Courage. Rachael
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.
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