Tag Archive: Pain

Living with pain

My name is Kyle Fries and I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) when I was 14 years old. I have had problems for as long as I can remember. I have flat feet which uses to wake me up crying to my mom wondering why I was in pain. My mom was diagnosed
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a photo of Katherines hand, her thumb is bent back and touching her wrist

Stuck in limbo

My Ehlers-Danlos syndrome (EDS) went undetected until I joined the army and during basic training, developed stress fractures in my hips. After being discharged and going into an Aviation Maintenance school, the pain continued and more problems began to pop up.  After many X-rays and doctor visits, I met Dr. Olson at Duke University hospital
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The image shows me drawing the head of a green parrot using green colour pencils, the rest of its body is unfinished. Two hands are shown with ringsplints and c-splints on the wrists.

Giving up on dreams but not giving up

Ever since I was little I was an active child, not necessarily sporty but always busy with something, from playing outside to knitting and crocheting. When I started first grade and learned to write I started to get wrist pain, but given my large range of creative hobbies, my parents and I blamed it on
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Jessica Vigo Ehlers-Danlos syndrome

EDS affects me every day of my life

I started having pain and issues around 7 years old, but it wasn’t until I was almost 16 that I was diagnosed with Ehlers-Danlos syndrome (EDS). I went through hundreds of tests, procedures, and I was even told that it was “in my head.” EDS affects me every day of my life in many different
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Dana

My pain management journey

I finally figured out why my body seemed to be acting against me. I was 20 years old when I was first diagnosed with Ehlers-Danlos syndrome (EDS). I was in my third year of college and was studying pathology. As I read a short paragraph in a long textbook about EDS, I knew right then
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Kayla smiles at the camera

My invisible illness

After twelve years, I have finally received the answer I’ve so desperately been searching for. My name is Kayla, I am 19 years old and I have hypermobile Ehlers-Danlos syndrome. For most of my life, I have pushed through lots of widespread joint pain and inflammation while thinking this was normal. Beginning at eight years
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Alyssa on her wedding day leaned over and kissing her husband

My EDS is always two steps forward and five steps back

Hello, my name is Alyssa Kelly, and I was formally diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) by a geneticist when I was 21. My mother knew something was wrong from the day I was born prematurely.  From that day forward it started, I had five sets of tubes from age 6 months to 5 years.  
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My twin sister and I fought to be believed

At 5 years old I remember my thumb and hips popping in and out of place. I would be in horrendous pain but I would keep it to myself. Then I would chat with my identical twin sister then we realized that our pain was very similar.  At around the age of 13, I decided
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a selfie of andrea in a car

My journey from “mushy muscles” to misdiagnosis

I was born in the ’70s… My parents were told I was born with “mushy muscles”. I didn’t walk until I was 20 months old, but I managed and I was cute. I was the firstborn on both sides of the family, so no other babies to compare to, though little things bothered my young
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Barbara sits in front of her wheelchair, with a dog sat in her wheelchair, and a horse stood on a block behind her

My life finally started after diagnosis

It took almost 24 years for me to be diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). For 24 years I was neglected by my medical professionals. When I finally got diagnosed, I was not sad, it came like a blessing to me. I felt a big relief because I was seen, heard, and believed. I was
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