Help Alexis Extinguish the Flames of CRPS
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In 2016, Alexis was diagnosed with Complex Regional Pain Syndrome or CRPS. CRPS is a rare, invisible illness caused by a traumatic injury, or event, such as surgery. According to the McGill Pain Scale, CRPS is classed as the most painful chronic pain condition that is known. It reaches approximately 42 out of 50 on the pain scale and is higher than non-terminal cancer and higher than amputation of a finger without anesthesia. In some research it has been said that CRPS Type II can reach as high as 47 out of 50 on the pain scale. In some cases, patients choose to undergo limb amputations in the most extreme cases.
Alexis has endured five long years of CRPS being present in both of her arms. The overwhelming effect of the nerve pain has been exceedingly strong, to the point of overwhelming her nerves and sapping her ability to utilize fine motor skills and grip strength. This has caused Alexis to have to relearn an immense list of daily habits and motions. From holding a toothbrush, to holding eating utensils, to gripping a pencil. If you can imagine just how much people use their hands, Alexis has had to relearn all of these functions from scratch. She has had to effectively re-train herself to use her arms and hands, all while continuing to fight through the immense pain of CRPS. It has been a long five years and the battle continues until Alexis can receive an effective form of treatment that can help put her CRPS into remission for good.
After years of struggling with unsuccessful medical plans, she has found a new opportunity with a team of doctors at the Kennedy Krieger Institute. They are prepared to treat Alexis in an in-patient, residential treatment center with the goal of entering her Complex Regional Pain Syndrome into a state of remission. The in-patient treatment can last anywhere from 4 to 6 weeks, or longer, depending on her personal progress.
The staff at Kennedy Krieger informed Alexis that she would be admitted on Tuesday, June 16.
On Friday, June 12, just four days from this golden opportunity, Alexis received an email from the Kennedy Krieger medical team. After three appeals to her insurance company, and peer-to-peer evaluations by independent physicians, Alexis’ insurance has denied her treatment.
A single day at the Kennedy Krieger Institute is $3,600 out of pocket. With a 4 to 6 week stay, the total amount could be well over $200,000 out of pocket.
With exhausted resources, Alexis and her family are now asking for your help. A donation to support Alexis’ fight to extinguish the flames of Complex Regional Pain Syndrome (CRPS) is a donation of hope for Alexis’ future.
We express our deepest gratitude to everyone who has taken the time to read Alexis’ story. From the bottom of our hearts, we thank you for helping Alexis to continue her fight.
To learn more about Alexis and her experience with CRPS, please read below.
_________________________________________________________________________________________
In 2015, Alexis was a successful, happy-go-lucky, family-oriented, and exceptionally driven 16 year-old girl. She was a proud honor-roll student who was passionate about theater arts. She took great pride in always being there for anyone who needed her.
Alexis never imagined how quickly her world would be drastically changed in such a short amount of time. Early on that year, she began experiencing significant pain under her arms while performing her heart out on the theater stage. After meeting with doctors and specialists, Alexis was diagnosed with Hidradenitis Suppurativa - an incurable chronic skin condition that causes cysts to build and tunnel within a person's sweat glands. The only treatment option available to remove the cysts was surgery.
Unfortunately, due to poor post-surgery care from the operating physician, Alexis was left with open draining wounds under her arms that continued to remain open for a year as her pain began to increase and her mobility quickly began to spiral downward. The pain became unbearable and she began visiting doctor after doctor, seeking answers to her evolving pain, yet no one could provide an accurate answer or relief.
Time passed and, despite her ordeal, she continued to succeed in academics, not allowing the ever-elevating pain to stop her dreams. Her body begged for her to rest and to give in to the pain.
Yet, she kept fighting.
In 2016, Alexis was diagnosed with Complex Regional Pain Syndrome or CRPS. CRPS is a rare, invisible illness caused by a traumatic injury, or event, such as surgery. According to the McGill Pain Scale, CRPS is classed as the most painful chronic pain condition that is known. It reaches approximately 42 out of 50 on the pain scale and is higher than non-terminal cancer and higher than amputation of a finger without anesthesia. In some research it has been said that CRPS Type II can reach as high as 47 out of 50 on the pain scale. In some cases, patients choose to undergo limb amputations in the most extreme cases.
This life-changing diagnosis came shortly after Alexis underwent a second surgery to treat a flare-up of her Hidradenitis Suppurativa. The flare up, once again, elevated her pain levels even further and diminished her mobility dramatically. With the rigors of high school taking a toll on her energy, and with the significant stress from her illnesses, she was forced to continue her studies while homebound. The pain was too great to allow her to focus; her body was constantly fatigued from the pain.
Alexis missed out on important milestones in life: she could not attend high school events. Her body was too weak to drive a car. Alexis lost basic motor function in her hands which were a result of nerve-related tremors. She could no longer write.
Yet, she kept fighting.
In the spring of 2017, Alexis graduated high school at the top of her class and with an advanced diploma. Outwardly, she looked normal. Peers, teachers, and adults did not see her pain. To the outside world she was a successful, young, smart girl. They could not see the pain inside and witness the sleepless nights. Alexis began to experience the psychological pain and hopelessness anyone feels when living with an invisible illness.
Yet, she kept fighting.
As spring drew to a close, she felt that she had lost much of her identity, but she still wanted so much more for herself. She knew that there had to be others who could relate to how she was feeling. During this time, when Alexis’ body was screaming for relief, she still continued to think of others. And as she continued to meet with doctors, as well as began both physical and occupational therapy, she began to encounter young children that were experiencing long-term medical care for various illnesses. Alexis could not bear the idea of children experiencing pain, confusion, or loss of identity as they struggled with illnesses. She had to do something.
In the summer of 2017, Alexis founded Knock Back Let Fly (KBLF): an aspiring non-profit organization whose mission is to inspire hope and creative optimism in children who are in extended hospital care. KBLF creates and delivers care packages to young hospital patients while increasing awareness of the hardships they face when in extended hospital care.
In the fall of 2017, Alexis started her freshman year of college at the University of Mary Washington as a Political Science Major. She pursued working with the UMW theater department’s administrative offices, but sadly could not return to performing on stage. With a new beginning in college, her goals began to shift as she encountered a newfound passion in world security conflicts. As she started this new chapter, Alexis required numerous accommodations in order to help support her while she was unable to write or focus for long periods of time.
Throughout this time, doctors continued to encourage countless treatment plans, continued physical and occupational therapy, diet changes, neurological pain management treatments, and pain management rehabilitation.
The next year, in 2018, Alexis won third place in Lime Connect’s “Into the Limelight Contest.” Lime Connect awards people who have shown success and optimism while suffering from medical disabilities and challenges.
Alexis continued to show optimism, yet struggled with explaining the constant burning pain she feels every second of every day. She has come to know the struggles of those with an invisible illness all too well.
Yet, she keeps fighting.
Today, Alexis is preparing for her senior year in the upcoming 2020 Fall Semester. She is on track to graduate in the Spring of 2021 with the dream of applying to a U.S. Government Agency as soon as she is eligible after graduation.
As you have read, Alexis has endured five long years of CRPS being present in both of her arms. CRPS has caused her severe pain and robbed her of experiencing many milestones in the latter part of her teenage years to the present day. The debilitating effect of constant nerve pain has been exceedingly strong, to the point of overwhelming her nerves and sapping her ability to utilize fine motor skills and grip strength. It has been a long five years and the battle continues until Alexis can receive an effective form of treatment that can help put her CRPS into remission for good.
We express our deepest gratitude to everyone who has taken the time to read Alexis’ story. From the bottom of our hearts, we thank you for helping Alexis to continue her fight.
Alexis has endured five long years of CRPS being present in both of her arms. The overwhelming effect of the nerve pain has been exceedingly strong, to the point of overwhelming her nerves and sapping her ability to utilize fine motor skills and grip strength. This has caused Alexis to have to relearn an immense list of daily habits and motions. From holding a toothbrush, to holding eating utensils, to gripping a pencil. If you can imagine just how much people use their hands, Alexis has had to relearn all of these functions from scratch. She has had to effectively re-train herself to use her arms and hands, all while continuing to fight through the immense pain of CRPS. It has been a long five years and the battle continues until Alexis can receive an effective form of treatment that can help put her CRPS into remission for good.
After years of struggling with unsuccessful medical plans, she has found a new opportunity with a team of doctors at the Kennedy Krieger Institute. They are prepared to treat Alexis in an in-patient, residential treatment center with the goal of entering her Complex Regional Pain Syndrome into a state of remission. The in-patient treatment can last anywhere from 4 to 6 weeks, or longer, depending on her personal progress.
The staff at Kennedy Krieger informed Alexis that she would be admitted on Tuesday, June 16.
On Friday, June 12, just four days from this golden opportunity, Alexis received an email from the Kennedy Krieger medical team. After three appeals to her insurance company, and peer-to-peer evaluations by independent physicians, Alexis’ insurance has denied her treatment.
A single day at the Kennedy Krieger Institute is $3,600 out of pocket. With a 4 to 6 week stay, the total amount could be well over $200,000 out of pocket.
With exhausted resources, Alexis and her family are now asking for your help. A donation to support Alexis’ fight to extinguish the flames of Complex Regional Pain Syndrome (CRPS) is a donation of hope for Alexis’ future.
We express our deepest gratitude to everyone who has taken the time to read Alexis’ story. From the bottom of our hearts, we thank you for helping Alexis to continue her fight.
To learn more about Alexis and her experience with CRPS, please read below.
_________________________________________________________________________________________
In 2015, Alexis was a successful, happy-go-lucky, family-oriented, and exceptionally driven 16 year-old girl. She was a proud honor-roll student who was passionate about theater arts. She took great pride in always being there for anyone who needed her.
Alexis never imagined how quickly her world would be drastically changed in such a short amount of time. Early on that year, she began experiencing significant pain under her arms while performing her heart out on the theater stage. After meeting with doctors and specialists, Alexis was diagnosed with Hidradenitis Suppurativa - an incurable chronic skin condition that causes cysts to build and tunnel within a person's sweat glands. The only treatment option available to remove the cysts was surgery.
Unfortunately, due to poor post-surgery care from the operating physician, Alexis was left with open draining wounds under her arms that continued to remain open for a year as her pain began to increase and her mobility quickly began to spiral downward. The pain became unbearable and she began visiting doctor after doctor, seeking answers to her evolving pain, yet no one could provide an accurate answer or relief.
Time passed and, despite her ordeal, she continued to succeed in academics, not allowing the ever-elevating pain to stop her dreams. Her body begged for her to rest and to give in to the pain.
Yet, she kept fighting.
In 2016, Alexis was diagnosed with Complex Regional Pain Syndrome or CRPS. CRPS is a rare, invisible illness caused by a traumatic injury, or event, such as surgery. According to the McGill Pain Scale, CRPS is classed as the most painful chronic pain condition that is known. It reaches approximately 42 out of 50 on the pain scale and is higher than non-terminal cancer and higher than amputation of a finger without anesthesia. In some research it has been said that CRPS Type II can reach as high as 47 out of 50 on the pain scale. In some cases, patients choose to undergo limb amputations in the most extreme cases.
This life-changing diagnosis came shortly after Alexis underwent a second surgery to treat a flare-up of her Hidradenitis Suppurativa. The flare up, once again, elevated her pain levels even further and diminished her mobility dramatically. With the rigors of high school taking a toll on her energy, and with the significant stress from her illnesses, she was forced to continue her studies while homebound. The pain was too great to allow her to focus; her body was constantly fatigued from the pain.
Alexis missed out on important milestones in life: she could not attend high school events. Her body was too weak to drive a car. Alexis lost basic motor function in her hands which were a result of nerve-related tremors. She could no longer write.
Yet, she kept fighting.
In the spring of 2017, Alexis graduated high school at the top of her class and with an advanced diploma. Outwardly, she looked normal. Peers, teachers, and adults did not see her pain. To the outside world she was a successful, young, smart girl. They could not see the pain inside and witness the sleepless nights. Alexis began to experience the psychological pain and hopelessness anyone feels when living with an invisible illness.
Yet, she kept fighting.
As spring drew to a close, she felt that she had lost much of her identity, but she still wanted so much more for herself. She knew that there had to be others who could relate to how she was feeling. During this time, when Alexis’ body was screaming for relief, she still continued to think of others. And as she continued to meet with doctors, as well as began both physical and occupational therapy, she began to encounter young children that were experiencing long-term medical care for various illnesses. Alexis could not bear the idea of children experiencing pain, confusion, or loss of identity as they struggled with illnesses. She had to do something.
In the summer of 2017, Alexis founded Knock Back Let Fly (KBLF): an aspiring non-profit organization whose mission is to inspire hope and creative optimism in children who are in extended hospital care. KBLF creates and delivers care packages to young hospital patients while increasing awareness of the hardships they face when in extended hospital care.
In the fall of 2017, Alexis started her freshman year of college at the University of Mary Washington as a Political Science Major. She pursued working with the UMW theater department’s administrative offices, but sadly could not return to performing on stage. With a new beginning in college, her goals began to shift as she encountered a newfound passion in world security conflicts. As she started this new chapter, Alexis required numerous accommodations in order to help support her while she was unable to write or focus for long periods of time.
Throughout this time, doctors continued to encourage countless treatment plans, continued physical and occupational therapy, diet changes, neurological pain management treatments, and pain management rehabilitation.
The next year, in 2018, Alexis won third place in Lime Connect’s “Into the Limelight Contest.” Lime Connect awards people who have shown success and optimism while suffering from medical disabilities and challenges.
Alexis continued to show optimism, yet struggled with explaining the constant burning pain she feels every second of every day. She has come to know the struggles of those with an invisible illness all too well.
Yet, she keeps fighting.
Today, Alexis is preparing for her senior year in the upcoming 2020 Fall Semester. She is on track to graduate in the Spring of 2021 with the dream of applying to a U.S. Government Agency as soon as she is eligible after graduation.
As you have read, Alexis has endured five long years of CRPS being present in both of her arms. CRPS has caused her severe pain and robbed her of experiencing many milestones in the latter part of her teenage years to the present day. The debilitating effect of constant nerve pain has been exceedingly strong, to the point of overwhelming her nerves and sapping her ability to utilize fine motor skills and grip strength. It has been a long five years and the battle continues until Alexis can receive an effective form of treatment that can help put her CRPS into remission for good.
We express our deepest gratitude to everyone who has taken the time to read Alexis’ story. From the bottom of our hearts, we thank you for helping Alexis to continue her fight.
Organizer
Alexis Byers
Organizer
Fredericksburg, VA