Help Kayti and River heal through EDS
Donation protected
Many of you know me as K-pine, my trail name. I love backpacking with my husband and looking after my two kids. I plan to live a lengthy, robust life and become a grandmother some day. I have a rare genetic disorder called Elher Danlos Syndrome. Due to it’s rarity, doctors often do not properly diagnose and treat it. It can be managed under the strategic eye of an Elher Danlos, medical team of physicians.
4 years ago my body started shutting down in small ways. I have been to a lot of doctors since then. In one word I would describe the last 4 years as, OUCH! I was diagnosed after my body failed to repair and heal after pelvic organ prolapse surgery. I remember the surgeon telling me that muscles she operated on were difficult to fix and that she expected I would need to come back and have the surgery again. This conversation happened the day after the surgery. I felt so disappointed! It was apparent from my many bruises and my abnormally long healing time that the surgery was abnormally difficult to perform because something was wrong. My body hurts. I now wear braces over my joints to prevent myself from tearing my muscles and ligaments. My sacrum twists out of my pelvic joint and many times I have had to have my husband come home from work because I can’t stand up. My daughter has also been seen and treated for congenital genetic disorders; yet never evaluated and tested by a geneticist. She has disabilities for which causes her to be the bravest person I have ever met. To date, she has had more surgeries in her 4 years of life than all of our immediate family combined. She even had a surgical procedure in the middle of the corona pandemic.
This past year, for reasons unknown, my digestive system stopped working. Like literally stopped. With help of a few dedicated providers, I have tried 41 different motility prescriptions and a lot of ER room visits. All of my prescriptions have failed within a few months of use. It is to be assumed that my brain is experiencing a neurological disorder. A disorder that should be evaluated by a team of specialists. When it comes to bodily systems shutting down, nothing should be left to assumption; which is the best my providers can do without the support of an EDS specialist. There is a doctor at OHSU who specializes in my condition, and my Medicaid insurance would cover the cost and treatment from them; however they have a 5 year long wait list. My condition has become critical as my insurance chose to deny my appeals to cover my most recent motility prescription. My motility prescription is $516 per month. This is astronomically high for anyone, considering that our family income has dropped several hundred percent below the federal poverty level since corona began, it is a barrier that will kill me.
It is also a known part of EDS that cardiac/pulmonary health can be gravely involved in a physical decline. My heart has tested positive for being effected by EDS. All of my providers have told me that my case is too complex for community doctors and that I need to be seen be a highly specialized medical team. I have yet to be assessed because there is such an unreasonable 5 year long wait list for my care. Five years is much to long for me to wait before receiving evaluation and treatment.
There is hope: There is a provider who is widely known for helping people like me. They have been recommended several times by patients and providers alike. They only have a 4 month waiting list rather than 5 years. Unfortunately, they are out of network with my insurance because they are not local and the cost out of pocket is $5168.00. Being that both my daughter and I show compelling symptoms of this rare condition; we both need to be tested and treated accordingly. This total reflects the cost of 2 appointments each for both myself and my daughter, River. This total will be enough for the specialist to refer us to providers who participate in my Medicaid insurance plan.
My children and husband and I will be fortunate to have a healthy me. My daughter will benefit from being treated at a young age to prevent the suffering that I have experienced in my late 20s. I will be turning this tumultuous experience into wisdom when I am older; wisdom that I can share with others who walk the path of EDS. But I need your help to be able to live that long. Will you consider helping us reach my goal?
A link to spread awareness of this rare genetic condition:
https://www.webmd.com/a-to-z-guides/ehlers-danlos-syndrome-facts#1
Where to send your donations:
Kaytlin PineTree
8220 Southwest Oak Street
Portland OR, 97223
I encourage you to send payment directly to me. GofundMe takes aprox 3% of your donations; and I will meet my goal faster if I am not also cutting 3% off my goal.
Thank you, kindly.
4 years ago my body started shutting down in small ways. I have been to a lot of doctors since then. In one word I would describe the last 4 years as, OUCH! I was diagnosed after my body failed to repair and heal after pelvic organ prolapse surgery. I remember the surgeon telling me that muscles she operated on were difficult to fix and that she expected I would need to come back and have the surgery again. This conversation happened the day after the surgery. I felt so disappointed! It was apparent from my many bruises and my abnormally long healing time that the surgery was abnormally difficult to perform because something was wrong. My body hurts. I now wear braces over my joints to prevent myself from tearing my muscles and ligaments. My sacrum twists out of my pelvic joint and many times I have had to have my husband come home from work because I can’t stand up. My daughter has also been seen and treated for congenital genetic disorders; yet never evaluated and tested by a geneticist. She has disabilities for which causes her to be the bravest person I have ever met. To date, she has had more surgeries in her 4 years of life than all of our immediate family combined. She even had a surgical procedure in the middle of the corona pandemic.
This past year, for reasons unknown, my digestive system stopped working. Like literally stopped. With help of a few dedicated providers, I have tried 41 different motility prescriptions and a lot of ER room visits. All of my prescriptions have failed within a few months of use. It is to be assumed that my brain is experiencing a neurological disorder. A disorder that should be evaluated by a team of specialists. When it comes to bodily systems shutting down, nothing should be left to assumption; which is the best my providers can do without the support of an EDS specialist. There is a doctor at OHSU who specializes in my condition, and my Medicaid insurance would cover the cost and treatment from them; however they have a 5 year long wait list. My condition has become critical as my insurance chose to deny my appeals to cover my most recent motility prescription. My motility prescription is $516 per month. This is astronomically high for anyone, considering that our family income has dropped several hundred percent below the federal poverty level since corona began, it is a barrier that will kill me.
It is also a known part of EDS that cardiac/pulmonary health can be gravely involved in a physical decline. My heart has tested positive for being effected by EDS. All of my providers have told me that my case is too complex for community doctors and that I need to be seen be a highly specialized medical team. I have yet to be assessed because there is such an unreasonable 5 year long wait list for my care. Five years is much to long for me to wait before receiving evaluation and treatment.
There is hope: There is a provider who is widely known for helping people like me. They have been recommended several times by patients and providers alike. They only have a 4 month waiting list rather than 5 years. Unfortunately, they are out of network with my insurance because they are not local and the cost out of pocket is $5168.00. Being that both my daughter and I show compelling symptoms of this rare condition; we both need to be tested and treated accordingly. This total reflects the cost of 2 appointments each for both myself and my daughter, River. This total will be enough for the specialist to refer us to providers who participate in my Medicaid insurance plan.
My children and husband and I will be fortunate to have a healthy me. My daughter will benefit from being treated at a young age to prevent the suffering that I have experienced in my late 20s. I will be turning this tumultuous experience into wisdom when I am older; wisdom that I can share with others who walk the path of EDS. But I need your help to be able to live that long. Will you consider helping us reach my goal?
A link to spread awareness of this rare genetic condition:
https://www.webmd.com/a-to-z-guides/ehlers-danlos-syndrome-facts#1
Where to send your donations:
Kaytlin PineTree
8220 Southwest Oak Street
Portland OR, 97223
I encourage you to send payment directly to me. GofundMe takes aprox 3% of your donations; and I will meet my goal faster if I am not also cutting 3% off my goal.
Thank you, kindly.
Organizer
Kayti Thornton-PineTree
Organizer
Beaverton, OR