EDS is a genetic disorder that is underdiagnosed and rarely acknowledged. I have a personal connection to this story, I was with my girlfriend Lauren Papp from when she first learned about the disease to getting diagnosed and I saw how it affected her. Watching her inspired me to spread awareness about the condition and find others who have gone through the process of getting diagnosed, and show how the disease affects their lives.

Lauren Papp has Ehlers-Danlos Syndrome, a genetic connective tissue disease that causes joint dislocation, chronic pain, fatigue, and more. EDS is an incurable disease that is underdiagnosed due to its lack of acknowledgment from the medical community. Papp has been waiting for a referral to a rheumatologist for treatment after getting diagnosed with EDS at Nationwide Children’s Hospital in Columbus, Ohio in August 2019. Papp was referred to Nationwide after visiting Hudson Health Center in Athens, Ohio with a suspicion of having the disease after reading about it online and relating to the symptoms. Doctors believed she had Vascular EDS, which is fatal. They found a mutation in a gene that makes collagen in a genetics panel. Her mother has the same mutation and its effect is unknown. She’s struggled with getting professional treatment because many of her doctors were unfamiliar with the disease. She self-treats her symptoms and battles joint pain daily. “People need to know about this, nobody looked out for me and I had to do all this on my own.” – Lauren Papp.

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Lauren Papp has Ehlers-Danlos Syndrome, a genetic connective tissue disease that causes joint dislocation, chronic pain, fatigue, and more. EDS is an incurable disease that is underdiagnosed due to its lack of acknowledgment from the medical community. Papp has been waiting for a referral to a rheumatologist for treatment after getting diagnosed with EDS at Nationwide Children’s Hospital in Columbus, Ohio in August 2019. Papp was referred to Nationwide after visiting Hudson Health Center in Athens, Ohio with a suspicion of having the disease after reading about it online and relating to the symptoms. Doctors believed she had Vascular EDS, which is fatal. They found a mutation in a gene that makes collagen in a genetics panel. Her mother has the same mutation and its effect is unknown. She’s struggled with getting professional treatment because many of her doctors were unfamiliar with the disease. She self-treats her symptoms and battles joint pain daily. “People need to know about this, nobody looked out for me and I had to do all this on my own.” – Lauren Papp.

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Papp puts on kinesiology tape in her bedroom. It is applied in a special pattern to prevent shoulder subluxation and hold joints in place. November 13, 2019.

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Papp puts on kinesiology tape in her bedroom. It is applied in a special pattern to prevent shoulder subluxation and hold joints in place. November 13, 2019.

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Papp spreading compost for a new tree. Her condition quickly wears her out and she has to take frequent breaks during everyday tasks. November 20, 2019.

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Papp spreading compost for a new tree. Her condition quickly wears her out and she has to take frequent breaks during everyday tasks. November 20, 2019.

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Papp examines her foot after feeling symptoms of Raynaud’s, a disease that blocks blood flow to extremities. Raynaud’s syndrome, and several other autonomic conditions are linked to EDS. November 20, 2019.

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Papp examines her foot after feeling symptoms of Raynaud’s, a disease that blocks blood flow to extremities. Raynaud’s syndrome, and several other autonomic conditions are linked to EDS. November 20, 2019.

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Raynaud's syndrome causes blotchy purple and white patterns on the skin triggered by heat or cold and causes pain like pinpricks. Papp displays a mild episode after spending an hour in 50-degree weather. November 20, 2019.

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Raynaud's syndrome causes blotchy purple and white patterns on the skin triggered by heat or cold and causes pain like pinpricks. Papp displays a mild episode after spending an hour in 50-degree weather. November 20, 2019.

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Papp takes high-strength Ibuprofen to treat back and wrist pain after gardening. Papp experienced multiple joint dislocations while lifting compost. Papp didn’t attend class that day due to fatigue from working in the yard. November 20, 2019.

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Papp takes high-strength Ibuprofen to treat back and wrist pain after gardening. Papp experienced multiple joint dislocations while lifting compost. Papp didn’t attend class that day due to fatigue from working in the yard. November 20, 2019.

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Papp frequently takes baths to relax her muscles and treat joint pain on bad days. Her cat Emmeline keeps her company. November 20, 2019.

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Papp frequently takes baths to relax her muscles and treat joint pain on bad days. Her cat Emmeline keeps her company. November 20, 2019.

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Papp drives to First Settlement Physical Therapy in Athens, Ohio. She hopes to get approval for physical therapy to treat her hypermobility. December 4, 2019.

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Papp drives to First Settlement Physical Therapy in Athens, Ohio. She hopes to get approval for physical therapy to treat her hypermobility. December 4, 2019.

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Papp after finding out she could be treated, but would be the first EDS patient at the facility. Papp always felt like she was slower and weaker than her classmates and blamed herself for being lazy. The EDS diagnosis gave her an explanation for her physical condition, and allowed her to forgive herself. “My diagnosis was a gift that I fought for. It was incredibly validating.” – Lauren Papp. December 4, 2019.

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Papp after finding out she could be treated, but would be the first EDS patient at the facility. Papp always felt like she was slower and weaker than her classmates and blamed herself for being lazy. The EDS diagnosis gave her an explanation for her physical condition, and allowed her to forgive herself. “My diagnosis was a gift that I fought for. It was incredibly validating.” – Lauren Papp. December 4, 2019.

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Papp and Price compare hypermobility ‘party tricks’ in Papp’s home. They rely on each other for support and share new ways to treat their pain. November 13, 2019. 

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Papp and Price compare hypermobility ‘party tricks’ in Papp’s home. They rely on each other for support and share new ways to treat their pain. November 13, 2019. 

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Nora Price believes she has EDS from her father’s side and has been unable to receive proper medical examinations. She first learned of EDS from Lauren Papp, her co-worker, when Papp was struggling with her diagnosis. Papp was demonstrating her symptoms and Price was consistently able to mimic symptoms. Price scored perfectly on the Beighton scale, a metric to determine EDS. After months of research she tried to get a referral from her doctor but was declined by Ohio State University Medical Center and Cleveland Clinic because they are no longer accepting EDS patients. Her pain affects her daily. Her jaw can get dislocated by sleeping on a pillow, she has a hard time sitting through classes, and is often late to class if her knees dislocate, but has no medical accommodation for her problems. “It’s a lot more than just the joint pain. Sitting up straight is an exercise, it feels like I’m holding a weight up. I can’t lift cat litter, or even gallon jugs.”

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Nora Price believes she has EDS from her father’s side and has been unable to receive proper medical examinations. She first learned of EDS from Lauren Papp, her co-worker, when Papp was struggling with her diagnosis. Papp was demonstrating her symptoms and Price was consistently able to mimic symptoms. Price scored perfectly on the Beighton scale, a metric to determine EDS. After months of research she tried to get a referral from her doctor but was declined by Ohio State University Medical Center and Cleveland Clinic because they are no longer accepting EDS patients. Her pain affects her daily. Her jaw can get dislocated by sleeping on a pillow, she has a hard time sitting through classes, and is often late to class if her knees dislocate, but has no medical accommodation for her problems. “It’s a lot more than just the joint pain. Sitting up straight is an exercise, it feels like I’m holding a weight up. I can’t lift cat litter, or even gallon jugs.”

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Kirsten Thomas got diagnosed with EDS when she was 13. She was active in sports and planning to play varsity soccer when she got to high school. She pulled her hamstring and a sports physical therapist referred her to Cincinnati Children’s where she got diagnosed. She attended a physical therapy camp for two weeks and got accommodation for massage therapy, chiropractic care, and could retake missed class assignments on her bad days. She knows she was lucky to get diagnosed early in her life, and has since been proactive about recovery. Still, she gave up her hopes of varsity and playing sports through college, and started to notice how people treated her differently once they found out she was disabled. “I never would have imagined this, I didn’t even know about EDS and now I’m affected by it every day. It changed everything and it changed very quickly.”

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Kirsten Thomas got diagnosed with EDS when she was 13. She was active in sports and planning to play varsity soccer when she got to high school. She pulled her hamstring and a sports physical therapist referred her to Cincinnati Children’s where she got diagnosed. She attended a physical therapy camp for two weeks and got accommodation for massage therapy, chiropractic care, and could retake missed class assignments on her bad days. She knows she was lucky to get diagnosed early in her life, and has since been proactive about recovery. Still, she gave up her hopes of varsity and playing sports through college, and started to notice how people treated her differently once they found out she was disabled. “I never would have imagined this, I didn’t even know about EDS and now I’m affected by it every day. It changed everything and it changed very quickly.”

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