Stripes for Chelsea
Donation protected
Letter from Chelsea:
"To put a very long story short, I have struggled with a myriad of health issues for years. A lot of these issues (chronic headaches, fatigue, nausea and vomiting, heart palpitations/chest pain, etc.) I had just attributed to stress, and I powered through. My chronic joint pains I attributed to old basketball injuries and life, accepting them as a new 'normal'. However, back in February, my right hip started hurting to the point where I could barely walk and my gait was so thrown off so bad that my left hip started to hurt almost equally as bad. Finally, I had enough and went to the doctor. Weeks of doctors appointments and imaging went by and finally, it was discovered that I had a CAM impingement in both of my hips, a torn labrum in my right, and that I needed surgery on the right hip.
All of this was happening at the same time my grandmother was hospitalized. After a particularly stressful visit saying my goodbyes to my grandmother before her passing, my health issues snowballed. I went in for a follow-up with my primary care and just broke down crying about how miserable I have been feeling for the last year, how much worse it had become in the last couple of weeks, and that I finally wanted to be thoroughly evaluated for a connective tissue disorder (I had previously been haphazardly evaluated for Marfan's Syndrome in my teen years). And thus began my journey."
The initial findings:
Significant pleurisy in lungs.
Stress and overuse of NSAIDS for pain had caused ulcers to develop in the stomach
Heart rate was skyrocketing (from 60 to 150 bpm) immediately upon standing and blood pressure was plummeting. Chelsea now uses a wheelchair as a mobility aid due to severe fatiguing and shortness of breath from even short distances of slow walking and prevent fainting spells.
Diagnosis by Geneticist:
A genetic connective tissue disorder such as Marfan's, vEDS, or hEDS (pending genetic testing results)
*Please follow this link to learn more about these disorders, the organ systems that they affect, and how you can help on a global level*
*Additional links on why the zebra , and a glimpse into life with a connective tissue disorder are linked here*
So what does this mean for Chelsea?
Chelsea underwent surgery to repair her right hip on April 18th. Tests needed to confirm the genetic condition, and diagnose it, have been a constant part of her life these last months. She is covered by student insurance and has already exceeded the $4000 deductible in the last few months from these lab tests, MRIs, other imaging tests, hip surgery, and physical therapy, however, the student insurance resets in August and the bills will once again begin accumulating (up to $4000). In addition, she has made do with the used wheelchair that she was able to find, but it is technically too small for her and the self-propulsion style is hard on her shoulders and wrists.
She still needs a chemical stress test w/ ECHO, thoracic MRI of her heart, 3-6 more months of physical therapy, likely MRI of left hip with suspected surgery, POTS treatment (expensive prescriptions and possible 2X per week IV infusions to increase low blood volume), and whatever other treatments are necessary as judged by cardiologist and pulmonologist. These are just the procedural medical bills expected in the next several months!
All of the funds raised on this page will be going towards her medical bills and getting medical equipment that she needs. She is at the very beginning of a long road towards trying to regain mobility and figuring out what her long-term prognosis looks like.
We are hoping to reach our goal by the end of August for when her deductible gets reset.
---Erica Myers
Additional information about Chelsea's test can be found below:
ECHO:
Significant dilation of the aortic root
Impaired relaxation upon left ventricle fill (this paired with the tachycardia upon standing greatly reduces the total blood output with each beat of the heart.
Pulmonary Function Test:
Significantly reduced rate of gas exchange at pleural tissue (DLCO at 65% expected)
Sudden block of airflow upon forced exhalation (cause yet to be determined, theorized to be related to glottal collapse at moment)
Neurological testing:
Bilateral hyperresponsive tendon reflexes, positive Babinski, and mild clonus at ankles
MRI did not show Chiari Malformation, but tests are ongoing to investigate other potential CNS issues that could be responsible for neurological symptoms.
"To put a very long story short, I have struggled with a myriad of health issues for years. A lot of these issues (chronic headaches, fatigue, nausea and vomiting, heart palpitations/chest pain, etc.) I had just attributed to stress, and I powered through. My chronic joint pains I attributed to old basketball injuries and life, accepting them as a new 'normal'. However, back in February, my right hip started hurting to the point where I could barely walk and my gait was so thrown off so bad that my left hip started to hurt almost equally as bad. Finally, I had enough and went to the doctor. Weeks of doctors appointments and imaging went by and finally, it was discovered that I had a CAM impingement in both of my hips, a torn labrum in my right, and that I needed surgery on the right hip.
All of this was happening at the same time my grandmother was hospitalized. After a particularly stressful visit saying my goodbyes to my grandmother before her passing, my health issues snowballed. I went in for a follow-up with my primary care and just broke down crying about how miserable I have been feeling for the last year, how much worse it had become in the last couple of weeks, and that I finally wanted to be thoroughly evaluated for a connective tissue disorder (I had previously been haphazardly evaluated for Marfan's Syndrome in my teen years). And thus began my journey."
The initial findings:
Significant pleurisy in lungs.
Stress and overuse of NSAIDS for pain had caused ulcers to develop in the stomach
Heart rate was skyrocketing (from 60 to 150 bpm) immediately upon standing and blood pressure was plummeting. Chelsea now uses a wheelchair as a mobility aid due to severe fatiguing and shortness of breath from even short distances of slow walking and prevent fainting spells.
Diagnosis by Geneticist:
A genetic connective tissue disorder such as Marfan's, vEDS, or hEDS (pending genetic testing results)
*Please follow this link to learn more about these disorders, the organ systems that they affect, and how you can help on a global level*
*Additional links on why the zebra , and a glimpse into life with a connective tissue disorder are linked here*
So what does this mean for Chelsea?
Chelsea underwent surgery to repair her right hip on April 18th. Tests needed to confirm the genetic condition, and diagnose it, have been a constant part of her life these last months. She is covered by student insurance and has already exceeded the $4000 deductible in the last few months from these lab tests, MRIs, other imaging tests, hip surgery, and physical therapy, however, the student insurance resets in August and the bills will once again begin accumulating (up to $4000). In addition, she has made do with the used wheelchair that she was able to find, but it is technically too small for her and the self-propulsion style is hard on her shoulders and wrists.
She still needs a chemical stress test w/ ECHO, thoracic MRI of her heart, 3-6 more months of physical therapy, likely MRI of left hip with suspected surgery, POTS treatment (expensive prescriptions and possible 2X per week IV infusions to increase low blood volume), and whatever other treatments are necessary as judged by cardiologist and pulmonologist. These are just the procedural medical bills expected in the next several months!
All of the funds raised on this page will be going towards her medical bills and getting medical equipment that she needs. She is at the very beginning of a long road towards trying to regain mobility and figuring out what her long-term prognosis looks like.
We are hoping to reach our goal by the end of August for when her deductible gets reset.
---Erica Myers
Additional information about Chelsea's test can be found below:
ECHO:
Significant dilation of the aortic root
Impaired relaxation upon left ventricle fill (this paired with the tachycardia upon standing greatly reduces the total blood output with each beat of the heart.
Pulmonary Function Test:
Significantly reduced rate of gas exchange at pleural tissue (DLCO at 65% expected)
Sudden block of airflow upon forced exhalation (cause yet to be determined, theorized to be related to glottal collapse at moment)
Neurological testing:
Bilateral hyperresponsive tendon reflexes, positive Babinski, and mild clonus at ankles
MRI did not show Chiari Malformation, but tests are ongoing to investigate other potential CNS issues that could be responsible for neurological symptoms.
Organizer and beneficiary
Erica Myers
Organizer
Salt Lake City, UT
Chelsea Harmon
Beneficiary