- S
- A
tl/dr I urgently need a lot of expensive specialist appointments to get my chronic genetic condition under control. Don't wanna give GoFundMe a %? Venmo @writteninthemargins
THE STORY:
I have attached a breakdown of my estimated costs for September through November. The GoFundMe goal is set well below my estimated costs for those months.
I'm not sure where to begin. Do I start with the pain that's increasing daily along with muscle weakness and joint issues that have put me in a wheelchair? The migraines and seizures? The diagnosis of "exercise induced asthma" in elementary school that I'm just now finding out is likely a life-threatening tracheal problem? How I became allergic to every single antibiotic at 14 for reasons the doctors couldn't explain.
I have Ehlers Danlos Sydrome Hypermobility type (HEDS). Ehlers Danlos is syndrome caused by a genetic mutation that makes my collagen defective. Because collagen is in every single part of a person's body from your heart to your joints to your digestive tract, this disease is incredibly widespread and effects my full system. I also have many other, co-morbid, problems—like Mast Cell Activation Syndrome, complex migraines and seizures, a potential cerebrospinal fluid leak, a syringomyelia in my spine and possibly Chiari malformation, POTS, and more. This happens to some degree in many people with EDS.
I am intermittently totally unable to eat and there is a high chance that I will have to have a feeding tube installed in order to receive consistent nutrition.
I am in the process of establishing relationships with a number of doctors and setting up a care team. This includes a cardiologist, pulmonologist, two neurologists, two gastroenterologists, and more. There are few doctors with knowledge of EDS and the particular combination of neurological and GI complications that I have. Seeing doctors has become especially urgent due to the onset of more severe and frequent seizures, mast cell issues, and GI issues.
In general, the comorbid issues with EDS effect my neurological system very severely, as well as my GI tract, and the autonomic systems in my body like my breathing, blood circulation, and temperature. One example of how that all interacts is that body has issues regulating my heart rate and blood pressure which (among other things) causes extreme dizziness and unsteadiness on my feet. My GI system malfunctions for periods of time, making it impossible to eat, which causes more dizziness and heart palpitations.
I currently have no insurance and have been trying to get on MediCal for many months. I am not sure how much insurance will hep me because I need to see doctors that understand and have knowledge of these rare diseases, which often includes traveling out of state, and when it doesn't, may not be able to comply with MediCal's requirements for which doctors to use.
From mid-September until the end of November, I have 24 appointments to see doctors or get imaging such as an MRI and gastric emptying study. This number may grow. Right now, my projected costs from mid September until the end of November are $16,665.80. I have over $30,000 in overdue unpaid medical bills just from 2019. There is $7,000 currently due. My credit is shot from medical bills in the past, so I cannot get a loan.
I appreciate any help, whether monetary or spreading the word. I feel really weird doing this. I feel really weird processing everything that's going on, but it's not an option to ignore my health anymore.
My mental health has been suffering as well. It's always been difficult for me to go to social outings, but until recently, I often pushed myself and paid for it later. I can't do that anymore and I have been missing out on almost all of my social interactions and ability to leave the house. Getting this care means more hope of a liveable life.
Thank you.
Sept - Nov costs
THE STORY:
I have attached a breakdown of my estimated costs for September through November. The GoFundMe goal is set well below my estimated costs for those months.
I'm not sure where to begin. Do I start with the pain that's increasing daily along with muscle weakness and joint issues that have put me in a wheelchair? The migraines and seizures? The diagnosis of "exercise induced asthma" in elementary school that I'm just now finding out is likely a life-threatening tracheal problem? How I became allergic to every single antibiotic at 14 for reasons the doctors couldn't explain.
I have Ehlers Danlos Sydrome Hypermobility type (HEDS). Ehlers Danlos is syndrome caused by a genetic mutation that makes my collagen defective. Because collagen is in every single part of a person's body from your heart to your joints to your digestive tract, this disease is incredibly widespread and effects my full system. I also have many other, co-morbid, problems—like Mast Cell Activation Syndrome, complex migraines and seizures, a potential cerebrospinal fluid leak, a syringomyelia in my spine and possibly Chiari malformation, POTS, and more. This happens to some degree in many people with EDS.
I am intermittently totally unable to eat and there is a high chance that I will have to have a feeding tube installed in order to receive consistent nutrition.
I am in the process of establishing relationships with a number of doctors and setting up a care team. This includes a cardiologist, pulmonologist, two neurologists, two gastroenterologists, and more. There are few doctors with knowledge of EDS and the particular combination of neurological and GI complications that I have. Seeing doctors has become especially urgent due to the onset of more severe and frequent seizures, mast cell issues, and GI issues.
In general, the comorbid issues with EDS effect my neurological system very severely, as well as my GI tract, and the autonomic systems in my body like my breathing, blood circulation, and temperature. One example of how that all interacts is that body has issues regulating my heart rate and blood pressure which (among other things) causes extreme dizziness and unsteadiness on my feet. My GI system malfunctions for periods of time, making it impossible to eat, which causes more dizziness and heart palpitations.
I currently have no insurance and have been trying to get on MediCal for many months. I am not sure how much insurance will hep me because I need to see doctors that understand and have knowledge of these rare diseases, which often includes traveling out of state, and when it doesn't, may not be able to comply with MediCal's requirements for which doctors to use.
From mid-September until the end of November, I have 24 appointments to see doctors or get imaging such as an MRI and gastric emptying study. This number may grow. Right now, my projected costs from mid September until the end of November are $16,665.80. I have over $30,000 in overdue unpaid medical bills just from 2019. There is $7,000 currently due. My credit is shot from medical bills in the past, so I cannot get a loan.
I appreciate any help, whether monetary or spreading the word. I feel really weird doing this. I feel really weird processing everything that's going on, but it's not an option to ignore my health anymore.
My mental health has been suffering as well. It's always been difficult for me to go to social outings, but until recently, I often pushed myself and paid for it later. I can't do that anymore and I have been missing out on almost all of my social interactions and ability to leave the house. Getting this care means more hope of a liveable life.
Thank you.
Sept - Nov costs