Spreading Awareness and Hoping for a Cure

By Sarah Daniels, Guest Columnist

When I was 25 I decided to reclaim my life. I left an abusive relationship and worked very hard on my physical and mental health. With diet and exercise, I went from 240 pounds to 180 pounds in about 5 months.

I thought losing weight would make me feel better, but as soon as I dropped weight I began to have debilitating pain. It got so bad I could no longer walk. Not only was it painful, I literally couldn’t move my leg. There were days I couldn’t get out of bed.

Most of the pain was in my hips; radiating down my legs into my feet. My doctor had no idea what to make of this so she sent me to a specialist. I waited months for the referral. Finally, my prayers would be answered. The specialist would be able to help me!

Instead they laughed and told me I should join the circus because I was so flexible. I am double jointed in every part of my body. I should have known then that this was just the beginning and it was going to be a long ride.

Four doctors, two physical therapists, and $8,000 worth of useless therapies later, I finally found a specialist who diagnosed me with Congenital Hip Dysplasia. They told me I had a torn labrum, severe tendonitis of the hip, and a shallow socket that permitted my hips to dislocate with even the slightest movement. In order to “fix” me they would do a surgery called a peri-acetabular osteotomy (PAO).



At the time, this surgeon was one of only two in the U.S. that performed PAOs. It was fairly new but had promising results. It had been three years since the onset of my symptoms, so I was desperate.

An incision was made into the skin, through the muscle, through the nerve, and into the bone. The pelvic bone was then cut in four spots, making it freely mobile and the head of the femur bone was reshaped. Lastly, the pelvic bone was tilted forward, and the femur is fit into the head of the joint. Three huge screws held everything together.

A PAO is one of the biggest major orthopedic surgeries in existence. The recovery was supposed to be 3 months and then I would have my right side done.

It took about 3 months for me to even move my leg on my own. It took 6 months to learn to walk again. Finally, after a year of recovery, I would continue on with my new normal: constant pain.

I had complication after complication from my hip surgery. Two years went by as I told my doctors I was continuing to have excruciating pain. They ignored me and told me it would go away.

I ended up going to a chiropractor when I herniated a disc in my back. After he took the x-rays he came racing into the room. Did I know my pelvic bone was broken in three different spots?

My bones had broken around each of the screws that were holding my hip together. No wonder I was in hideous pain.

I had surgeries to remove the screws, but my health continued to deteriorate. Emergency room visits became a usual thing for me. All of my joints began to fail.

Some days I have to use a wheelchair to get around because the multiple dislocations in my knees, hips, shoulders, and wrists prevent me from using a cane or even crutches.

I finally went to a geneticist and was diagnosed with Ehlers Danlos Syndrome (EDS). It is a group of hereditable connective tissue disorders with a mutation in the collagen, the glue that holds your body together. Symptoms range from easily bruised skin, broken bones and torn ligaments to digestive disorders and life threatening cardiac issues.

This diagnosis was my saving grace. It finally connected everything. On the same token, being diagnosed with an incurable chronic illness is an entire grieving process in its own. It is important to be responsible about recognizing signs and symptoms, but you also can’t let it consume you. You have to stay positive even though there is no end at the light of the tunnel. I began to find different ways of dealing with the pain, deep breathing, meditation, and listening to music. It was tough but I was getting by.

Then another problem developed. I was constantly sick to my stomach and couldn't keep anything down. I spent most of my days throwing up and didn’t know why. I lost 70 pounds. No longer was I only dealing with pain, I had no energy or nutrients to keep me going. I went to a gastrointestinal specialist, who diagnosed me with Gastroparesis.

Ordinarily, muscles propel food through your digestive tract but with Gastroparesis, your stomach's motility works poorly or not at all.  My digestive tract was almost 100% paralyzed. I had to do something 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 illnesses had already taken from me, they was now taking my body. I stopped getting my period and couldn’t stop the weight from coming off. I went from a size 12 to a size 0 in a matter of months. Friends would tell me I was lucky I was thin. Lucky? I feared for my life!

I spent most of my days with my head in the toilet, praying I wouldn’t aspirate and die. When I was too weak to sit up on my own, my boyfriend would sit with me, watching to make sure I was safe. I would give 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 that was there now, 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 get somewhat of a handle on my illness.  

In the beginning of this story I was a happy, healthy, outspoken young woman with a great job, 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 due to my numerous surgeries, office visits, and medications. I had to quit my dream job that I loved. I am no longer able to work and had to file for disability at the age of 28.

I was let go from my most recent job after two years because they thought I needed to "focus on my health." 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. I’m now stuck with an almost $600 monthly Cobra insurance bill with no idea how to pay it.

I have thousands of dollars of medical debt, I am months behind on my rent and utilities, and at the time of writing, I have no groceries or gas. My illness has taken everything from me. My body, money, job, my positive outlook, independence, and friendships!

I am lucky to have a family that loves me. I have been blessed with an amazing boyfriend that does everything in the world for me, whom I love insurmountably. But even they are overwhelmed. Loving someone with a chronic illness is not always easy and definitely not always fair.

I’m writing this not to get sympathy. Sympathy won't help me. It won't cure me or make me better. I write to you because I want people to know that this horrible illness exists.

About 1 in 5,000 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 rare illness.

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. I will do whatever it takes to spread awareness. I only ask that you can join me in fighting for this cause!

Sarah Daniels lives in the Detroit, Michigan area. Sarah is a proud supporter of the Ehlers Danlos National Foundation and the Gastroparesis Patient Association for Cures and Treatments (G-Pact).

Sarah would also like you to know that that February 29 marks Rare Disease Day, which seeks to raise awareness about rare diseases such as EDS.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.