defeating dysautonomia: d's fight
Donation protected
Dear Everyone:
For those of you who haven't already: meet Denise. In a sentence, Denise is simply an all around beautiful person. Her compassion, kindness and sincerity have guided her life on a journey of service to others - from hospice caregiver to the dying, to rape victim advocate to traumatized assault survivors; from therapeutic specialist to vulnerable adults with developmental disabilities, to, most recently, ED and ICU nurse to critically ill patients and their families. Her curiosity about the world and adventurous spirit have taken her travel-nursing all over America, and in doing so, her infectious personality has earned her friends from coast to coast, and beyond.
Now, more than ever, Denise needs all of those friends (and anybody else who is willing and able) to rally around her and show her the care that she is most accustomed to providing to others. Here is her current situation:
In March of this year, after a bout of viral meningitis, Denise developed post-viral dysautonomia. What this means is that the autonomic branch of her nervous system, or ANS, stopped working properly. For anybody wondering what an ANS is responsible for doing in the body, here’s a quick summary: EVERYTHING! …from little things, like internal temperature control, to big things, like the regulation of breathing, digestion, and blood flow/oxygen delivery to all major organs (especially the brain, heart, lungs, gut, kidneys and skin). When the ANS isn’t doing its job well, the performance of every major organ in the body declines, and basic day-to-day function becomes a serious challenge.
Though there is currently no cure for dysautonomia, the good news is that 50% of people with Denise’s form of dysautonomia (called POTS) achieve a full or near-full remission over the course of 2-7 years. Denise is determined not only to become one of the 50%, but to become one as quickly as possible! In the past 7 months alone, she has progressed from being bed-bound and unable to consistently work or perform even the most basic activities (eg: standing up), to successfully returning to work and very moderate levels of low-key activities. However, persistent deficits in vision, hearing, balance, cognition and coordination still challenge her on a daily basis, as do impaired cardiorespiratory and gastrointestinal function. It is fair to say that she still has a long way to go.
In February, Denise is slated to start neurologic rehabilitation to continue the work of regaining the autonomic function that she has lost… but she needs our help! Her out-of-pocket medical expenses are already in excess of $35,000., and the additional cost of neurologic rehabilitation - a whopping $1200. per day - will not be covered by her insurance.
Denise has shown great strength and resilience through the many profound challenges that living with dysautonomia has imposed on her. While the cost of her upcoming treatment presents an additional challenge, Denise is eager, optimistic and confident about her potential for further recovery in pursuing this treatment. Please, as you are able, make a donation through this GoFundMe page to help lighten the burden of financial obstacle during this already difficult time. And thank you in advance to our friends, known and unknown, who make a commitment to rally around Denise and help carry her through.
Sincerely,
Abby Brass, Katie Clark and Sara Johnson
*for more information on dysautonomia/POTS and the role of neurologic rehabilitation in recovery, please view this video lecture by the very same Dr. Keiser who will be rehabilitating Denise, or visit Innova Brain Rehabilitation's website.
*for a patient story from a patient with dysautonomia/POTS who was successfully rehabilitated with Dr. Keiser, please view this YouTube video series.
For those of you who haven't already: meet Denise. In a sentence, Denise is simply an all around beautiful person. Her compassion, kindness and sincerity have guided her life on a journey of service to others - from hospice caregiver to the dying, to rape victim advocate to traumatized assault survivors; from therapeutic specialist to vulnerable adults with developmental disabilities, to, most recently, ED and ICU nurse to critically ill patients and their families. Her curiosity about the world and adventurous spirit have taken her travel-nursing all over America, and in doing so, her infectious personality has earned her friends from coast to coast, and beyond.
Now, more than ever, Denise needs all of those friends (and anybody else who is willing and able) to rally around her and show her the care that she is most accustomed to providing to others. Here is her current situation:
In March of this year, after a bout of viral meningitis, Denise developed post-viral dysautonomia. What this means is that the autonomic branch of her nervous system, or ANS, stopped working properly. For anybody wondering what an ANS is responsible for doing in the body, here’s a quick summary: EVERYTHING! …from little things, like internal temperature control, to big things, like the regulation of breathing, digestion, and blood flow/oxygen delivery to all major organs (especially the brain, heart, lungs, gut, kidneys and skin). When the ANS isn’t doing its job well, the performance of every major organ in the body declines, and basic day-to-day function becomes a serious challenge.
Though there is currently no cure for dysautonomia, the good news is that 50% of people with Denise’s form of dysautonomia (called POTS) achieve a full or near-full remission over the course of 2-7 years. Denise is determined not only to become one of the 50%, but to become one as quickly as possible! In the past 7 months alone, she has progressed from being bed-bound and unable to consistently work or perform even the most basic activities (eg: standing up), to successfully returning to work and very moderate levels of low-key activities. However, persistent deficits in vision, hearing, balance, cognition and coordination still challenge her on a daily basis, as do impaired cardiorespiratory and gastrointestinal function. It is fair to say that she still has a long way to go.
In February, Denise is slated to start neurologic rehabilitation to continue the work of regaining the autonomic function that she has lost… but she needs our help! Her out-of-pocket medical expenses are already in excess of $35,000., and the additional cost of neurologic rehabilitation - a whopping $1200. per day - will not be covered by her insurance.
Denise has shown great strength and resilience through the many profound challenges that living with dysautonomia has imposed on her. While the cost of her upcoming treatment presents an additional challenge, Denise is eager, optimistic and confident about her potential for further recovery in pursuing this treatment. Please, as you are able, make a donation through this GoFundMe page to help lighten the burden of financial obstacle during this already difficult time. And thank you in advance to our friends, known and unknown, who make a commitment to rally around Denise and help carry her through.
Sincerely,
Abby Brass, Katie Clark and Sara Johnson
*for more information on dysautonomia/POTS and the role of neurologic rehabilitation in recovery, please view this video lecture by the very same Dr. Keiser who will be rehabilitating Denise, or visit Innova Brain Rehabilitation's website.
*for a patient story from a patient with dysautonomia/POTS who was successfully rehabilitated with Dr. Keiser, please view this YouTube video series.
Organizer and beneficiary
Abby Brass
Organizer
Indianapolis, IN
Denise Lavoix
Beneficiary