Here is the shortest explanation of my story that I can offer. I am undiagnosed and uninsured, and after 11 years, my doctors and I think we may know what's wrong. We think its a disease called vascular Ehlers Danlos Syndrome. The blood test I need is $1,500, and I have been working closely with U. R. Our Hope, GeneDx, and my doctor to raise the money. I am now $150 away. I most likely need to have the full $150 before my doctor will order the test.
As of right now, I am stuck. I cannot get better (if possible) and start working again, because doctors can't treat you if they don't know what you have. I can't get disability without an official diagnosis, and thus I can't get health insurance (Medicaid), either. When the President enacted Affordable Care Act, I looked into that, too But since I am unable to work, I am unable to pay taxes, so the ACA has nothing for me, since it uses tax credits to provide discounted health insurance. My state also chose not to expand Medicaid.
$150 may not seem like a lot of money to most people, but it is for me. Because of this disease, I cannot work like everyone else can. I work a tiny little bit, though. Once a month (sometimes less than that), I write an article for CrowdMed. They compensate me very reasonably, and I thank God for the job every single day. But because I can only work once a month or less, it is not enough to be financially independent or to pay taxes. I am living on $50 a month or less, so I would obviously need a little help with that $150.
And that is the short version of my story. For a more detailed explanation of everything, you read the following:
- My GoFundMe updates PLEASE NOTE: you may have to click "View All Updates" and start from the bottom. Also, I know that we are not allowed to ask for donations via GFM. I am simply including this site, because it provides more details on my story.
- A recent update on my entire story (PLEASE NOTE: Please start with the "diagnosis journey" link at the beginning of the story - it will explain the first half of my story.)
- My story on the Rare & Undiagnosed Network
A few more things to note:
* As I mentioned before, I am NOT asking for donations via GFM. I will, however, ask that donations go through U. R. Our Hope. You must simply indicate that the donation is for me specifically by including my first and last name. If you donate through UROH, none of the money will go to my PayPal account (I can't afford a bank account). It will go directly toward the cost of the blood test. Message me for details.
* I know that my story probably sounds incredulous. If you send me a message, I'd be happy to answer any and all questions, as long as they are relevant to this post. If there is anything I can do to verify the validity of my story, feel free to let me know.
* For more information on how someone could end up uninsured, even with "ObamaCare" in place, read this.
I promise this is not a scam or any kind of manipulative ploy. Yes, I did include a few of my CrowdMed posts, but they explain my point well. I receive the same compensation regardless of how many people read or don't read them.
Since these posts require that I include my general location, I am in the state of Georgia, in the US.
And once again, if you have any questions, just ask away.
Thank you!!
11 years old ยท 36k karma
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- 9 years ago
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