Disability aid for Dana - Ehlers Danlos diagnosis
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Hi!
[tldr: I have ehlers-danlos, mast cell activation disorder, and POTs and the treatment is wickedly expensive and some of the specialists don't take insurance.]
Since I was 3mo old, my body hasn't ever worked right. My first surgery was for a very rare intestinal issue that almost killed me. It's been all downhill since then. I used to faint as a kid constantly, I never ran the mile in high school. I was sick 24/7 leading some teachers to outwardly accuse me of faking and not allowing me to make up school work. I go bullied for "faking it for attention." For the last 10 years, things have gotten worse. I'm in constant pain- often times totally unable to walk or do simply things like brush my hair. I can't regulate my body temperature, almost faint/sometimes do faint, my skin turns into giant welts if anyone touches me, and get sick if anyone sneezes within 50 miles of me (ok that one is an exaggeration but I really do get sick instantly). Before the pandemic, I was isolated from my friends and family, because I was afraid to leave the house due to the constant pain. I often can't stand for more than 5 minutes, or walk more than 10 minutes at a time. I have some good days, but they are on the rare side.
After a bunch of misdiagnoses, MRIs, X-rays, tests, and rude doctors- I finally have the diagnosis to explain why my body has never cooperated: Ehlers-Danlos, mast-cell activation disorder, and postural orthostatic tachycardia syndrome. We're also in the process of exploring gastroparesis.
Essentially, I have a rare genetic condition that causes issues with collagen in my body. My joints are loose and hypermobile causing insury and pain, my immune system can be triggered simply by a touch and then attacks me, my heart can't effectively regulate my blood pressure, and more. Even my teeth are affected. Every single part of my body is affected.
In order to treat this triad of conditions, I need a team of doctors.
In the city of Chicago, there are only two medical doctors specialized in Ehlers-Danlos. One is not open to new patients, and the other does not accept insurance. Initial appointments are $500, and then range from $175-$275 for all follow ups, which I will need 1-2 follow ups a month. That doesn't include the physical therapy appointments that I have to attend twice a week for 2-3 months to begin with- which is typically around $480 a month after insurance. I also have no idea how many more X-rays, blood tests, and MRI's I am going to need. Right now we are staring with an MRI and endoscopy.
Mobility aids can range from $100-$200 so that will be another cost, and I will need 2 asap, with another 2 depending on the success of physical therapy. I also have to see an autonomic neurologist and a pain specialist, which I am not positive on the costs on. I should revisit my cardiologist, but that is one expense I could probably do without. I also have to pay for various medications to treat this condition- which is typically $20 per med.
These specialist doctors are also spread across Skokie, Uptown, Logan Square, and downtown Chicago.
I am lucky to have an FSA, but what is available in that will be drained after the first month and a half. My partner is an angel and has offered to help as much as possible, but considering he is a barista and already suffering in this pandemic, it's hard to expect him to carry all of the weight. He also has to carry a ton of emotional weight when I am unable to do things for myself- like clean, cook, or even brush my own hair.
I have other medical expenses on top of these for conditions unrelated to my disability (PCOS/endometrosis/adenomyosis) and have already been spending so much money on those.
Any donations will go straight towards medical expenses or expenses directly related to my disability.
I've been so lucky to have a stable job all through out the pandemic and COVID and have tried to give back as often as I can, but this isn't something anyone is ever prepared for. I feel so bad asking when I know I am/have been so fortunate, and I appreciate any kindness you can offer. I'm asking for $2000 to at least get me a few months of security.
I also have venmo: @danaland
& Cashapp: $danamarieland
[tldr: I have ehlers-danlos, mast cell activation disorder, and POTs and the treatment is wickedly expensive and some of the specialists don't take insurance.]
Since I was 3mo old, my body hasn't ever worked right. My first surgery was for a very rare intestinal issue that almost killed me. It's been all downhill since then. I used to faint as a kid constantly, I never ran the mile in high school. I was sick 24/7 leading some teachers to outwardly accuse me of faking and not allowing me to make up school work. I go bullied for "faking it for attention." For the last 10 years, things have gotten worse. I'm in constant pain- often times totally unable to walk or do simply things like brush my hair. I can't regulate my body temperature, almost faint/sometimes do faint, my skin turns into giant welts if anyone touches me, and get sick if anyone sneezes within 50 miles of me (ok that one is an exaggeration but I really do get sick instantly). Before the pandemic, I was isolated from my friends and family, because I was afraid to leave the house due to the constant pain. I often can't stand for more than 5 minutes, or walk more than 10 minutes at a time. I have some good days, but they are on the rare side.
After a bunch of misdiagnoses, MRIs, X-rays, tests, and rude doctors- I finally have the diagnosis to explain why my body has never cooperated: Ehlers-Danlos, mast-cell activation disorder, and postural orthostatic tachycardia syndrome. We're also in the process of exploring gastroparesis.
Essentially, I have a rare genetic condition that causes issues with collagen in my body. My joints are loose and hypermobile causing insury and pain, my immune system can be triggered simply by a touch and then attacks me, my heart can't effectively regulate my blood pressure, and more. Even my teeth are affected. Every single part of my body is affected.
In order to treat this triad of conditions, I need a team of doctors.
In the city of Chicago, there are only two medical doctors specialized in Ehlers-Danlos. One is not open to new patients, and the other does not accept insurance. Initial appointments are $500, and then range from $175-$275 for all follow ups, which I will need 1-2 follow ups a month. That doesn't include the physical therapy appointments that I have to attend twice a week for 2-3 months to begin with- which is typically around $480 a month after insurance. I also have no idea how many more X-rays, blood tests, and MRI's I am going to need. Right now we are staring with an MRI and endoscopy.
Mobility aids can range from $100-$200 so that will be another cost, and I will need 2 asap, with another 2 depending on the success of physical therapy. I also have to see an autonomic neurologist and a pain specialist, which I am not positive on the costs on. I should revisit my cardiologist, but that is one expense I could probably do without. I also have to pay for various medications to treat this condition- which is typically $20 per med.
These specialist doctors are also spread across Skokie, Uptown, Logan Square, and downtown Chicago.
I am lucky to have an FSA, but what is available in that will be drained after the first month and a half. My partner is an angel and has offered to help as much as possible, but considering he is a barista and already suffering in this pandemic, it's hard to expect him to carry all of the weight. He also has to carry a ton of emotional weight when I am unable to do things for myself- like clean, cook, or even brush my own hair.
I have other medical expenses on top of these for conditions unrelated to my disability (PCOS/endometrosis/adenomyosis) and have already been spending so much money on those.
Any donations will go straight towards medical expenses or expenses directly related to my disability.
I've been so lucky to have a stable job all through out the pandemic and COVID and have tried to give back as often as I can, but this isn't something anyone is ever prepared for. I feel so bad asking when I know I am/have been so fortunate, and I appreciate any kindness you can offer. I'm asking for $2000 to at least get me a few months of security.
I also have venmo: @danaland
& Cashapp: $danamarieland
Organizer
Dana Land
Organizer
Chicago, IL