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In memory of
Samantha Ellen Schaaf
April 15, 1991 - December 3, 2023
Apr 15, 1991 - Dec 3, 2023
In lieu of flowers
Please consider a contribution to support recovery and care needs.
$419.00
of $11,000 goal
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Background
Samantha so wanted to be here, especially for Remy. She was incredibly brave and tried so many ways and so many times to recover but, she was not able to access the care she needed.
Like other rare disorders, getting appropriate care is difficult due to a lack of medical professionals trained in Ehlers-Danlos Syndrome (EDS) care. There are many in the EDS community working on this. In the meantime, getting care involves finding knowledgeable providers, most of whom currently are private pay, which means large out-of-pocket expenses.
Getting the myriad symptoms of EDS properly diagnosed is challenging. But, it is crucial to get appropriate care. Much can be done to improve quality of life, treat issues appropriately to the diagnosis with better outcomes, avoid known complications, and have a better chance at preventing catastrophes.
Samantha couldn't get the care she needed, not only for her diagnosed rare genetic conditions but also for the undiagnosed brain injuries.
Karlie’s odyssey to her EDS diagnosis took until she was 55 years old. Relatives in earlier generations had no way of knowing, but those of us still living and our children and grandchildren have that possibility.
We hope that with your support, we can recover financially, support Remy’s future, and provide funding to help our genetically related family members get genetic testing and access to EDS knowledgeable practitioners.
Any amount you can contribute will make a difference—even $5.
Lara Bloom, president and CEO of The Ehlers-Danlos Society, who herself has hEDS, says many patients have “medicalized PTSD.” They have had to stop their careers, they’ve had to drop out of school, their relationships have broken down. The delay inevitably results in worsening symptoms and a declining quality of life. In worst-case scenarios, patients are “dying by suicide, they’re self-harming.”
“...it is a huge disservice to patients when they’re not receiving that management and care, as even the simple validation of being believed goes such a long way and that is still not happening. Misdiagnosis plays a large part in a delayed EDS diagnosis. We still have lots of people with symptoms being blamed on anxiety and depression or hormones and it’s simply not good enough,” says Bloom. “In addition, we are now seeing more people with hypermobile EDS, which historically did not shorten your life expectancy, dying from highly avoidable causes such as suicide or complications with malnutrition from gastrointestinal symptoms that were missed or put down to psychological issues.”
The lasting trauma Ehlers-Danlos patients experience due to negative encounters with clinicians is referred to as Clinician Associated Trauma and the result of this traumatization is worse – but preventable – health outcomes.
Thank you for taking the time to learn about our family's challenges with Ehlers-Danlos Syndrome, Traumatic Brain Injury, and Alcohol Use Disorder. See Karlie’s Note for more information. Please reach out if you’d like to learn more.
We are incredibly grateful for everyone's love and support. No matter the size, every contribution makes a meaningful difference! Contribute
Like other rare disorders, getting appropriate care is difficult due to a lack of medical professionals trained in Ehlers-Danlos Syndrome (EDS) care. There are many in the EDS community working on this. In the meantime, getting care involves finding knowledgeable providers, most of whom currently are private pay, which means large out-of-pocket expenses.
Getting the myriad symptoms of EDS properly diagnosed is challenging. But, it is crucial to get appropriate care. Much can be done to improve quality of life, treat issues appropriately to the diagnosis with better outcomes, avoid known complications, and have a better chance at preventing catastrophes.
Samantha couldn't get the care she needed, not only for her diagnosed rare genetic conditions but also for the undiagnosed brain injuries.
Karlie’s odyssey to her EDS diagnosis took until she was 55 years old. Relatives in earlier generations had no way of knowing, but those of us still living and our children and grandchildren have that possibility.
We hope that with your support, we can recover financially, support Remy’s future, and provide funding to help our genetically related family members get genetic testing and access to EDS knowledgeable practitioners.
Any amount you can contribute will make a difference—even $5.
Lara Bloom, president and CEO of The Ehlers-Danlos Society, who herself has hEDS, says many patients have “medicalized PTSD.” They have had to stop their careers, they’ve had to drop out of school, their relationships have broken down. The delay inevitably results in worsening symptoms and a declining quality of life. In worst-case scenarios, patients are “dying by suicide, they’re self-harming.”
“...it is a huge disservice to patients when they’re not receiving that management and care, as even the simple validation of being believed goes such a long way and that is still not happening. Misdiagnosis plays a large part in a delayed EDS diagnosis. We still have lots of people with symptoms being blamed on anxiety and depression or hormones and it’s simply not good enough,” says Bloom. “In addition, we are now seeing more people with hypermobile EDS, which historically did not shorten your life expectancy, dying from highly avoidable causes such as suicide or complications with malnutrition from gastrointestinal symptoms that were missed or put down to psychological issues.”
The lasting trauma Ehlers-Danlos patients experience due to negative encounters with clinicians is referred to as Clinician Associated Trauma and the result of this traumatization is worse – but preventable – health outcomes.
Thank you for taking the time to learn about our family's challenges with Ehlers-Danlos Syndrome, Traumatic Brain Injury, and Alcohol Use Disorder. See Karlie’s Note for more information. Please reach out if you’d like to learn more.
We are incredibly grateful for everyone's love and support. No matter the size, every contribution makes a meaningful difference! Contribute
Funds are being collected and disbursed by Karlie Cole, Samantha's mother.
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Memories & condolences
My heart goes out to your whole family! Her courage continues as you educate and advocate both in the health care field…
My heart goes out to your whole family! Her courage continues as you educate and advocate both in t…
My heart goes out to your whole family! Her courage continues as…
In lieu of flowers
Please consider a contribution to support recovery and care needs.
$419.00
of $11,000 goal
Show your support:
Contribute
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