Getting to know Empowering Ellen and her life with EDS
Living with a chronic illness is consuming and exhausting. Chronic illness effects a number of children in the world and is grossly misunderstood. Ellen is a 12 year old who is learning to live with Ehlers Danlos Syndrome, which ultimately has also caused her to suffer from Dysautanomia, POTS, Chronic Pseudo Intestinal Obstruction with a Cecostomy, anxiety disorder, sleep disorder, and chronic fatigue.
While the rest of the world moves outside... Ellen spends her days locked within her body and mind... with pain and exhaustion. Living with EDS (Ehlers Danlos Syndrome) has challenged her to see life in a different way than most 12 year olds. She has spent her life in and out of hospitals... having more pokes, procedures and surgeries than children should have to go through.
What is Ehlers-Danlos Syndrome? EDS is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen. The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. EDS can manifest in a number of ways.
Interestingly, it can also effect family members in different ways. EDS can also cause other health issues in individuals such as Dysautanomia and POTS. Both are related to the autonomic nervous system, that which our body automatically controls without us thinking about: body temperature, breathing, heart beat, blood pressure, etc.... Ellen has a vascular component which compromises her internally. At birth, both of Ellen's lungs collapsed and during her cecostomy placement her bowel perforated in numerous places. This created an additional health concern. We held our breath, wondering when the next medical emergency would arrive.
Our family's introduction to the medical world started nearly 20 years ago. Steven, Ellen's older brother, also shares the same health concerns as herself. Both began experiencing significant issues around 12-18 months of age. At the very beginning their health issues were very misunderstood. Doctors tried the best they could to explore and treat the main health concerns. It resulted in a lot of specialized doctor appointments at clinics hours from our home, tests, procedures, hospitalizations, surgeries and more questions and concerns that constantly kept surfacing. They were amazed and intrigued by their similarities ... and confused. After Steven (at age 8 years old) received his cecostomy it was suggested that Ellen (at age 4) also undergo the same surgical procedure. Ellen's large intestine does not function properly. In some respects the surgery helped... in others... it continued to cause more issues. This was frustrating to the doctors as they simply did not understand why the kids were having so many issues internally.
It was during a routine GI visit... when our doctor (who had just been working with a new intern specializing in Ehlers Danlos Syndrome) diagnosed the kids! It wasn't until that moment... just a short three years ago... that we finally started understanding the issues and looking towards "hope". With the diagnosis came a relief... as well as concern. EDS (Ehlers Danlos Syndrome) is considered a rare disease. IT HAS NO CURE. The best we could do is try to manage and slow the symptoms – symptoms that are pretty much guaranteed, in the long run, to get worse. EDS is an invisible disease. What does this mean? Looking at Ellen you may "see" a happy, healthy child, however; in the "inside" it is a very different story.
In this past four years, Ellen's health has worsened. She has started wearing braces on her knees and ankles and she uses a wheelchair when needed. She is at a very high fall risk. Unfortunately, there is no warning when her legs give out from underneath her, sending her to the ground. She fights daily chronic pain and exhaustion. She has suffered from unexplained fevers and sore throats that can last for weeks and months. Often times, she sleeps 12-15 hours a day and wakes exhausted. Unless you have walked in these shoes... it is hard to understand the daily struggles, the unpredictability from minute to minute and the fact that pain outweighs life. Pain ends parties, commitments, celebrations, holidays... pain shifts families... and people... in a way that is intensely life changing. Working on relationships when you are in a perpetual state of exhaustion often means isolation.
We struggle with professionals who don't understand the complexity of EDS and the disease... family, friends, school, community, strangers.... also unfortunately struggle with understanding, as well. It isn't their fault by any means... it just "is what it is". We try our best to help others understand. Education is the key. One of the major concerns of chronically ill children is the amount of time they spend away from school. Ellen has missed a considerable amount over the years. This ultimately effects her social connections and causes issues with isolation.
She was placed in Special Education with OHI (Other Health Impairment). The school has worked with us to create a 504 plan that allows Ellen the ability to attend as much school as she can... as well as social events that occur, helping to build a strong social network. This concept is structured in a way that she is not penalized for poor attendance, but rather... celebrated for the times she can attend. The school has constructed a schedule where Ellen attends a minimal amount of classes each day during the week. She is welcomed to join the kids on any class trip or special occasion. The district has purchased broadcasting equipment that is used to video tape her classes. This has been a very unique way of keeping her connected to her classmates. Most importantly, it is working!
EDS is unique from person to person and varies within family groups. It also can change on a daily basis. Our goal is to help Ellen have the best quality of life, enjoying her childhood and creating memories. The unpredictability of the disease has us scrambling most days, however we are learning to cope... One day at a time... sometimes... one hour at a time... one minute at a time. Meanwhile, reaching out to other families with chronically ill children offering support and sharing knowledge has been lifesaving for our family. This is why we created Empowering Ellen, a page on facebook. It follows Ellen's every day life... The good, the bad and the ugly... while we try our best to keep "normalcy" within our family ... and proving to others... you can live though the "bumpy" and "ugly" days... but it does not come without sacrifice and compromise. Through it all... we stand strong. It has been quite a journey of growth for all of us.
You can join Ellen's Journey at Empowering Ellen: https://www.facebook.com/empoweringellen