My Zebra fight with Ehlers Danlos Syndrome

By Sarah, United States, January 31, 2016

My name is Sarah Daniels. In order for me to tell my story I cannot give the short version. However, I will try my best not to make it too long. In 2009 I went through a break up from an abusive boyfriend. I decided to finally get healthy again and start my life over. Not only did I work on my mental state, I also worked very hard physically. I began to diet and exercise. I was doing everything right and losing weight. I ended up going from 240 pounds down to 180 pounds. I was happy with this success the only problem was, as soon as the weight came off, I began to have debilitating pain. All of the sudden, I could no longer walk. I worked at Coffee Beanery cafe in Wixom Michigan as a manager. I loved my job and all of the customers however, with this new onset of symptoms, I could not continue on.

I began to search for a doctor that may know how to help me. After about a year I finally found a specialist who told me I had congenital hip dysplasia. I also had tendonitis and a labrum tear. They told me they would be able to do a surgery called a periacetabular osteotomy. The surgery resets the hip joint and Places the femur back into the acetabulum to prevent dislocation and further tearing of the labrum. They told me I would be better within 3 months of the surgery and after that I would have the surgery on my right side. A PAO is one of the biggest major orthopaedic surgeries that exist. It took about 3 months for me to even be able to move my leg again. They cut through the muscle, nerve, and bone. The EDS causes even slower healing times. It took 6 months to learn how to walk again and I still had to use crutches for 8 to 12 months post op. Finally, after a year, I would continue on with my new normal: constant pain. In 2011 they told me I would be better in 3 months. It is now the end of 2015 and I am fighting for my life.

Last year I was diagnosed with Ehlers Danlos Syndrome. It is a group of hereditable connective tissue disorders with a mutation in the collagen, the glue that holds your body together. Symtpoms range from easily bruising skin, broken bones and torn ligaments, to digestive disorders and life threatening cardiac issues. I soon would learn that all of my life long medical problems are linked to this terrible, life altering, debilitating illness. Because of EDS, i have had complication after complication with my original hip surgery. After my first surgery, two years went by as I told my doctors I was continuing to have horrible pain. They ignored me. I hurt my back and went to a chiropractor. He did xrays and found, not only did I have a herniated disc in my back, my pelvic bone was also broken...in three different spots. My bones had broken around the surgery site. In 2013 I had my second surgery to remove the original hardware, and put three more screws into the hip joint to hold the fractures together. They told me I would be better in 3 weeks. 2 more years went on with horrible constant pain! They finally agreed to do an MRI. The screws holding my.hip together were completely loose and turning around and around in my bone. 2015 came and I had my third surgery to take the hardware out. Because of certain complications, they had to leave one of the screws in my hip at that time. My hip will never be the same. I will never get better. I will only get worse. I have Ehlers Danlos Syndrome.

My body began to deteriorate quickly. ER visits became a usual thing for me whether it was a dislocation, costochondritis (slipping rib syndrome), blod clots and/or hematomas. All of my joints began to fail. I now have pain in all of my joints. Some days I have to use a wheelchair to get around. Some days I cant even dress myself. I need help with almost all aspects of my self care. I began to find different ways of dealing with the pain. Deep breathing, meditation, listening to music. It was tough but I was getting by.

In January I started becoming very ill. I was constantly sick to my stomach and couldn't keep anything down. I spent most of my days throwing up and couldn't understand why. By April, I had lost about 70 pounds. I began to fear something was very wrong. My situation started to become dangerous. No longer was I only dealing with pain, I had no energy or nutrients to even keep me going. I set out on another search for yet another specialist. In June, I met with a gastrointestinal specialist. After taking my history and doing some testing, I was diagnosed with gastroparesis. Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, your stomach's motility works poorly or not at all. My digestive tract was almost 100% paralyzed. I had to.do something quick or a feeding tube would be in my near future. I had always been overweight my whole life,and never thought for a second, i would literally be starving to death. On top of everything my illness had already taken from me, it was now taking my body, my hips, my curves, my breasts. I stopped getting my period and couldnt stop the weight from coming off. I went from a size 12/14 to a size 0 in a matter of months. Friends would tell me at least I was thin and I should feel lucky. LUCKY?! I wanted to smack them! I feared for my life! They couldn't possibly know what that felt like. I spent most of my days with my head in the toilet, praying I wouldnt aspirate and choke and die, holding my head up by my hair with the tightest grip I could muster. I would give up anything to be able to eat again, to be able to look in the mirror and see my vivacious frame, instead of the sunken skeletal figure with massive amounts of skin hanging off my bones but this is a distant reality for me. Like Ehlers Danlos Syndrome, there is no cure for Gastroparesis. With medication, a new eating plan, and a daily shot to the stomach, I have been able to maintain my weight but I am still 30 lbs away from a healthy goal weight.

In the beginning of this story I was a happy, healthy, outspoken young woman with a great job, $25,000 in my savings account (my entire lifes savings) and the world on my shoulders. I had infinite possibilities ahead of me. I am writing to you now as a 29 year old female with the body of an 80 year old. I completely exhausted my savings accounts due to my numerous surgeries, office visits, and medication. I had to quit my dream job that I loved and I was good at. I am no longer able to work. I was let go from my most recent job in september because they thought I needed to "focus on my health." My boss told me now I could go home and not worry about anything. What a laugh. I tried to keep my job for as long as I could. It was the last thing that kept me connected to the normal world. They provided my full dental health and vision insurance which is obviously ESSENTIAL to my life. Im now stuck with an almost $600 monthly cobra bill that I have no idea how I will afford, but have to, or my insurance will be terminated and not reinstated. My parents have been helping me this whole time but as time goes on, they are pretty much tapped out. I have thousands of dollars of medical debt, I am 3 months behind on my rent and all my bills, I have no groceries, no gas. My illness has taken everything from me. My money, my job, my looks, my positivity, my independence, my friendships! I am lucky to have parents and a sister that love me and a supportive boyfriend, but even they are overwhelmed and done with it.

I write to you, and tell you my story, not to get sympathy. Sympathy won't help me, it won't cure me or make me better, but I write to you because I want people to know that this horrible illness exists. 1 in 2500 - 1 in 5000 people are affected by Ehlers danlos Syndrome and the varying comorbidities associated with it. I want people to know that there are hundreds of thousands of our fellow human beings that are suffering from this unknown illness. I want people to know how seriously it affects someone's life. Most doctors think if you have EDS it just means you are flexible. I have even had doctors tell me I should join the circus. If I have to, I will single handedly wipe out all of the ignorance surrounding ehlers-danlos syndrome. It has now become my goal to create and spread awareness.

I don't spend a lot of time these days wishing for my old life back. It only depresses me. However, I do take time to think about the future. With medical technology advancing every day, and with the help of others, there is no reason we should not be able to find a cure! I know this has been a long story to read. It hasn't been the happiest story or the most positive story, but it is my story. It is my story and I will do whatever it takes to spread awareness. I only ask that you can join me in fighting for this cause!

Sincerely,

Sarah Daniels

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.
X

Share your story




(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.