My battle w/ Ehlers-Danlos Syndrome

$665 of $2,500 goal

Raised by 20 people in 30 months
Sarah Emery Bradley  DAMARISCOTTA, ME

10 years ago after living my entire life with mystery medical problems I was diagnosed with a rare genetic connective tissue disorder known as Ehlers-Danlos Syndrome. At the time it was classified as Hypermobility type, the least scary of the six different kinds of EDS. Recently I was able to travel out of state to see a genetisist and Ehlers-Danlos specialist at The Center for Human Genetics. The amazing Dr. Jeff Milunsky has confirmed my previous diagnosis of EDS but does not feel that I do in fact have Hypermobility type. He believes that I more likely have Classical type and possibly Vascular type. The only way to determine which for sure is with genetic testing. Determining the type is important as it will dictate my course of treatment and if I do have VEDS (vascular type) knowing about it could potentially save my life. If it turns out that I have VEDS it means that I am suceptible to things like spontaneous organ rupture, sudden aortic dissection, or things like a routine surgery being more likely to result in serious complications or even death. Hopefully I do not have this type, but if I do, having confirmation of VEDS through genetic testing will make it so doctors and surgeons will be less likely to accidentally kill me. That's a good thing. Unfortunately my insurance does not cover this testing. Currently The Center for Human Genetics is holding a blood sample for me to give me time to come up with the money. I have one month in which to do so. I absolutely hate the idea of asking people to give me money but this is super crazy important so here I am asking.... Please please, pretty please, if you want to, and are able, and it doesn't cause any strain on you financially at all, would you maybe consider donating a little something, please? Ugh, typing that felt gross. Just a minute while I remind myself that I'm asking for help paying for a medical test and not a new tv.... Ok, I'm reminded. Thank you to any and all who donate anything at all. You're an amazing person for reading this, and you're extra amazing, super smart, and most likely have great taste in pants and books if you donate. Flattery gets you everywhere, right? Oh, I'm also going to throw in a link to The Center for Human Genetics website because really the money will only briefly be with me and you might want to know where your donation is going to end up. They're not just my doctor they're also a super cool non-profit that does awesome work in the field of genetics. Thank you again. ~Sarah.
http://chginc.org

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Update 6
Posted by Sarah Emery Bradley
29 months ago
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The test results are in! I don't have them though. In a building in Cambridge Mass there is a piece of paper with my name, and either ok or super bad news on it but I don't have the money to pay for it, yet. As you can imagine I'm a bit anxious to get my hands on that piece of paper. So, yet again, does anyone want to share this, please? Thank you!!
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Update 5
Posted by Sarah Emery Bradley
30 months ago
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Thanks to the unbelievable awesomeness of the people who donated to my gofundme, and the fabulous people who just showed up at my house and handed me cash, I now have enough money to keep the doctors from chucking my blood out with the biohazard!! As per my payment plan I needed one third of the $2500 to get them to do the testing, and I have it!! Thank you! Thank you! Thank you! Now to come up with another $834 to get the results. Without those the test is less than helpful. The other $834 to keep them from sending my bill to collections, I'll worry about that later. For now I'm just going to be really happy that there are people out there who like the idea of me being alive. That's pretty great.
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Update 4
Posted by Sarah Emery Bradley
30 months ago
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Ok, donations have kind of stalled out because I kind of stalled out on promoting this thing. I really dislike asking people to keep sharing and/or donating so I just went through a few days of denial and tried to convince myself that I don't need the testing and it would be a waste of people's money because I'm of no use to anyone anyway. Well I had a talk with some support group people and I'm back on track. They made a good point that comprising my health because I don't want to be a bother is silly, and that I not only deserve to live, I deserve to live as well as possible. I forget these things when I'm feeling useless. Anyway, I've officially called an end to my pity party and I'm in fight to live mode again. So share this thing! Share it hard!! Do it now!!! Um, please? Sorry, fight mode. :-)
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Update 3
Posted by Sarah Emery Bradley
30 months ago
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Thank you for donating and sharing! Up to $200 so far. I only need $600 more to get them to test the sample they're holding before it goes bad. Then another $800 to get the results, and another $800 so they don't send my bill to collections. I really appreciate your support amazing peoples!
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Abby Swan
29 months ago

Sorry i don't have any money i am able to donate right now but i did share your post! I hope you can raise the money in time to get your results, please keep us posted!

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$665 of $2,500 goal

Raised by 20 people in 30 months
Created July 12, 2016
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MS
$25
Margaret Small
29 months ago

Wishing you all the best, Sarah. I know other people dealing with this syndrome.

JR
$25
John Rosendo
29 months ago
SO
$100
Susan Orton
29 months ago

for Erica, Kajsa and Sven's friend in need... Sending with love...

KP
$50
Kajsa Pivko
29 months ago

Love your face

EC
$25
Eleanor Cox
29 months ago
AP
$50
Andrea Parker
29 months ago
KH
$35
Kate Hayford
29 months ago
$25
Anonymous
30 months ago
BS
$75
bob smyth
30 months ago
$25
Aislinn Renee
30 months ago
Abby Swan
29 months ago

Sorry i don't have any money i am able to donate right now but i did share your post! I hope you can raise the money in time to get your results, please keep us posted!

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