Help Erin Live with Ehlers-Danlos as an Amputee.
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Hi everyone!
My story is a bit complicated, so here is a timeline that details all of my health issues that have led me to where I am today. I am currently medically disabled, racking up medical debt from my many specialist appointments, ER visits, and tests. It is becoming more and more difficult to afford my co-pays, let alone my monthly bills like rent, phone, and car payment. Since I have a chronic, lifelong illness called Ehlers-Danlos Hypermobility, this is something I will live with for the rest of my life. Every little bit helps. Thank you for reading my story.
April 7, 2014
This is the day that changed my life forever. As a pole vaulter, my pole slipped out. I fell. End of story...or so I thought.
Fall, 2014
I started my undergraduate degree. After noticing more hip pain, I was referred to an orthopedic specialist.
December 1, 2014
My first hip surgery. This was an arthroscopic labral repair. I thought it was super intense then, but now it seems like nothing.
July 19, 2016
My second hip surgery. After a year of physical therapy and a bunch of other appointments, my team decided to go back in to repair my labrum again and reform my femoral head so it was actually round.
Summer, 2017
Still having pain. Shocker, right? Finally referred to the Mayo Clinic for what I thought would be a hip replacement.
December 1, 2017
My wedding date! December 1 started my hip journey and was remembered as a horrible day. I wanted to change my mindset about that date so we decided to get married on it. ♡
February 5, 2018
My first major and third overall hip surgery. This was an anteverting femoral neck osteotomy. Basically, my femur was cut in half and rotated. This included a couple night hospital stay.
Spring, 2018
I was doing AMAZING! I was walking without assistance and had very little pain. I even started my dream job. This all came crashing down before I knew it when...
June 7, 2018
A client chased me at work. I pivoted and ran to safety. This motion is believed to have caused my hip capsule to rupture which left my hip partially out of socket until...
March 28, 2019
I had a surgical hip dislocation with capsular reconstruction via cadaveric tendon. My hip was popped out and my team used a donated Achilles tendon to make a new hip capsule.
March 29, 2019
My surgeon came to visit me in my hospital room. With how my hip was situated, there is now a large hole on my femoral head. He told me I need a hip replacement.
August 28, 2019
At 24 years old, I had a left hip replacement.
January, 2020
After finally making progress in physical therapy, I developed ulcers from taking ibuprofen daily to help manage my pain for so long. This caused me to be unable to eat solid food for three months. I lost 50 pounds during this time.
March, 2020
I was formally diagnosed with Rapid Gastric Emptying Disorder and Functional Dyspepsia. With medication, I started to be able to eat again after modifying my diet. I can not even eat chocolate anymore.
June 11, 2020
After months of partially dislocating my new hip on a daily basis, I had a left hip revision replacement. My leg was also lengthened by half an inch. I still partially dislocate, but it is no longer daily.
July 23, 2020
I was formally diagnosed with a genetic connective tissue disorder called Ehlers-Danlos Syndrome Hypermobility type. This disorder explains all of my earlier symptoms, besides the known trauma to my hip. If I didn't have so much down time due to my hip surgeries, the hEDS wouldn't have progressed like it did according to my geneticist.
August 26, 2020
I am currently on crutches, waiting to find out my surgical date for a discoid meniscus in my right knee. At night or when walking long distance is required, I use a wheelchair to get around. My quality of life has drastically decreased and I can no longer do so many things I could even a year ago. Life is different, but that's okay.
Fall 2020
I suffered multiple dislocations and subluxations in many different joints like my shoulder, kneecap, ribs, and more.
My story is a bit complicated, so here is a timeline that details all of my health issues that have led me to where I am today. I am currently medically disabled, racking up medical debt from my many specialist appointments, ER visits, and tests. It is becoming more and more difficult to afford my co-pays, let alone my monthly bills like rent, phone, and car payment. Since I have a chronic, lifelong illness called Ehlers-Danlos Hypermobility, this is something I will live with for the rest of my life. Every little bit helps. Thank you for reading my story.
April 7, 2014
This is the day that changed my life forever. As a pole vaulter, my pole slipped out. I fell. End of story...or so I thought.
Fall, 2014
I started my undergraduate degree. After noticing more hip pain, I was referred to an orthopedic specialist.
December 1, 2014
My first hip surgery. This was an arthroscopic labral repair. I thought it was super intense then, but now it seems like nothing.
July 19, 2016
My second hip surgery. After a year of physical therapy and a bunch of other appointments, my team decided to go back in to repair my labrum again and reform my femoral head so it was actually round.
Summer, 2017
Still having pain. Shocker, right? Finally referred to the Mayo Clinic for what I thought would be a hip replacement.
December 1, 2017
My wedding date! December 1 started my hip journey and was remembered as a horrible day. I wanted to change my mindset about that date so we decided to get married on it. ♡
February 5, 2018
My first major and third overall hip surgery. This was an anteverting femoral neck osteotomy. Basically, my femur was cut in half and rotated. This included a couple night hospital stay.
Spring, 2018
I was doing AMAZING! I was walking without assistance and had very little pain. I even started my dream job. This all came crashing down before I knew it when...
June 7, 2018
A client chased me at work. I pivoted and ran to safety. This motion is believed to have caused my hip capsule to rupture which left my hip partially out of socket until...
March 28, 2019
I had a surgical hip dislocation with capsular reconstruction via cadaveric tendon. My hip was popped out and my team used a donated Achilles tendon to make a new hip capsule.
March 29, 2019
My surgeon came to visit me in my hospital room. With how my hip was situated, there is now a large hole on my femoral head. He told me I need a hip replacement.
August 28, 2019
At 24 years old, I had a left hip replacement.
January, 2020
After finally making progress in physical therapy, I developed ulcers from taking ibuprofen daily to help manage my pain for so long. This caused me to be unable to eat solid food for three months. I lost 50 pounds during this time.
March, 2020
I was formally diagnosed with Rapid Gastric Emptying Disorder and Functional Dyspepsia. With medication, I started to be able to eat again after modifying my diet. I can not even eat chocolate anymore.
June 11, 2020
After months of partially dislocating my new hip on a daily basis, I had a left hip revision replacement. My leg was also lengthened by half an inch. I still partially dislocate, but it is no longer daily.
July 23, 2020
I was formally diagnosed with a genetic connective tissue disorder called Ehlers-Danlos Syndrome Hypermobility type. This disorder explains all of my earlier symptoms, besides the known trauma to my hip. If I didn't have so much down time due to my hip surgeries, the hEDS wouldn't have progressed like it did according to my geneticist.
August 26, 2020
I am currently on crutches, waiting to find out my surgical date for a discoid meniscus in my right knee. At night or when walking long distance is required, I use a wheelchair to get around. My quality of life has drastically decreased and I can no longer do so many things I could even a year ago. Life is different, but that's okay.
Fall 2020
I suffered multiple dislocations and subluxations in many different joints like my shoulder, kneecap, ribs, and more.
December 22, 2021
I endured a right knee MPFL reconstruction to fix my repeatedly dislocated kneecap.
January, 2021
I somehow tore the labrum in my right hip while trying to accommodate for my right knee brace during my MPFL reconstruction recovery.
February 4, 2021
I was able to raise enough funds to see Dr. Shanda Dorff, an EDS specialist in the Twin Cities. After a 5.5 hour video appointment, I had additional diagnoses of Mast Cell Activation Syndrome, Dysautonomia, and Bilateral Hand Weakness. This lead to several referrals being made out to different specialists as well as a prescription for Low Dose Naltrexone to manage my chronic widespread body pain.
March 1, 2021
I visited with a new physical therapist who specializes in EDS. We learned I have intense ankle instability and my sacrum is displaced. I start to see her regularly March 22.
Friday, March 5
After meeting a hand therapist specializing in EDS, she suspected I have severe carpal tunnel in my left hand and mild in my right hand. This diagnosis was confirmed after seeing an orthopedic specialist. I will have an EMG to determine where the nerve is pinched in my left hand and will be scheduling surgery afterwards.
March 8, 2021
I learned after an ankle MRI that I have an acutely fractured medial talar dome with suspected avascular necrosis (bone death) on the lateral talar dome within my ankle as well as piece of cartilage floating about in the joint space. I am back to non-weight bearing and am in dire need of a lightweight electric wheelchair that is compact enough to fit in the trunk of my car, so I do not need to invest any money in alternating my car to fit a traditional electric wheelchair.
Unfortunately, my insurance company is denying the claim for the specific wheelchair I need, but will not cover the cost to alternate my car to fit a traditional electric wheelchair. The specific wheelchair I need is a Fold&Go Magshock (https://www.foldandgowheelchairs.com/travel-friendly/magnesium-electric-wheelchair-slate/ - $2895) which is what I will be directing new funds from this GoFundMe for. I will be unable to have any of my many needed surgeries until I get an electric wheelchair because my shoulder instability and carpal tunnel prevent me from utilizing crutches and a manual wheelchair reliably.
January, 2021
I somehow tore the labrum in my right hip while trying to accommodate for my right knee brace during my MPFL reconstruction recovery.
February 4, 2021
I was able to raise enough funds to see Dr. Shanda Dorff, an EDS specialist in the Twin Cities. After a 5.5 hour video appointment, I had additional diagnoses of Mast Cell Activation Syndrome, Dysautonomia, and Bilateral Hand Weakness. This lead to several referrals being made out to different specialists as well as a prescription for Low Dose Naltrexone to manage my chronic widespread body pain.
March 1, 2021
I visited with a new physical therapist who specializes in EDS. We learned I have intense ankle instability and my sacrum is displaced. I start to see her regularly March 22.
Friday, March 5
After meeting a hand therapist specializing in EDS, she suspected I have severe carpal tunnel in my left hand and mild in my right hand. This diagnosis was confirmed after seeing an orthopedic specialist. I will have an EMG to determine where the nerve is pinched in my left hand and will be scheduling surgery afterwards.
March 8, 2021
I learned after an ankle MRI that I have an acutely fractured medial talar dome with suspected avascular necrosis (bone death) on the lateral talar dome within my ankle as well as piece of cartilage floating about in the joint space. I am back to non-weight bearing and am in dire need of a lightweight electric wheelchair that is compact enough to fit in the trunk of my car, so I do not need to invest any money in alternating my car to fit a traditional electric wheelchair.
Unfortunately, my insurance company is denying the claim for the specific wheelchair I need, but will not cover the cost to alternate my car to fit a traditional electric wheelchair. The specific wheelchair I need is a Fold&Go Magshock (https://www.foldandgowheelchairs.com/travel-friendly/magnesium-electric-wheelchair-slate/ - $2895) which is what I will be directing new funds from this GoFundMe for. I will be unable to have any of my many needed surgeries until I get an electric wheelchair because my shoulder instability and carpal tunnel prevent me from utilizing crutches and a manual wheelchair reliably.
August 5, 2021
I underwent a right talus core decompression with the hope that it would increase the blood flow back into the bone so it would stop it from completely dying. Unfortunately, this surgery failed and took over three months for the tiny incision to close. After consulting with my surgeon and family, we made the decision to move forward with a total right ankle replacement even though there is a high risk of an amputation being needed.
December 14, 2021
This was the day for my total right ankle replacement. It was performed as an outpatient procedure because there were no hospital beds available due to COVID-19. When I woke up from surgery, I was in extreme pain that has only continued to worsen since my surgery date.
December 15, 2021
I started to develop a fever due to uncontrollable pain in my ankle. My doctor sent in a new prescription for stronger medication, but my insurance was fighting it. My fever disappeared, but the intense pain in my ankle did not stop even with several pain medications.
September 2, 2022
I became a below-the-knee amputee after my medical team discovered I was highly allergic to the cobalt component in my right ankle replacement. The metal was causing the debilitating and inflammation within my ankle. My bone density was too low for an ankle fusion, so an amputation was the only option to remove the allergen.
Organizer
Erin Diffley Kjer
Organizer
Saint Cloud, MN
