My name is Lydia. I’m a youth advocate, creative person, and nonprofit worker in Portland, Oregon. I’ve been a teacher for more than 10 years, and have done some community things. I’m currently a leader in a small art and history nonprofit. I’m really honored to serve in my position.
It seems that I have a rare condition called Ehlers-Danlos Syndrome, which is when your collagen, or the glue that holds your body together, doesn’t quite work right (you may have seen it on House or Grey’s Anatomy). There’s a lot we don’t know about EDS. We know that there are different degrees of seriousness, here are the three most common types, oversimplified and with their names written as if they were really cool video games (even though they most definitely aren’t):
“EDS 3: Hypermobility” - this one is not considered to be deadly, just shitty. Symptoms include extreme joint pain, frequent dislocations and “subluxations” (which is like a half-assed dislocation), Mast Cell Activation Disorder (which is like your body having allergic reactions to things that people aren’t normally allergic to, like temperature change) , POTS (which is when your heart has a harder time finding rhythm than Taylor Swift and Kim Kardashian at the 2015 Brit awards, but instead of a hilarious GIF it results in passing out or getting dizzy).
Some people with EDS 3 use mobility devices such as wheelchairs or canes. Often, they need braces and a special kind of tape to hold their joints in place. People with hypermobile type often have digestive issues, food sensitivity, and anxiety which makes a lot of sense when the glue that holds your body together doesn’t quite work right. This is the most common type, and it’s a lot of work.
“EDS 1: Classical” - You would think that this is The Original, but it’s more like level 2. It’s the second most common, and it’s basically Hypermobile type with more skin symptoms, aka being prone to bruising and wide scarring, skin tearing and “cigarette paper skin”, translucent skin, skin is also stretchier than normal, and can be described as “velvety”.
“EDS 4: Vascular” - As you may have guessed, this one is the most extreme of the 3 types, which you can tell because there’s a V in it which is the second most extreme letter of the English alphabet . With Vascular, you can have all of the symptoms of classical: soft skin, hypermobility, fatigue, basically all of the makings of a manic pixie dream sick girl, but then one day one of your organs ruptures and you die (oh no!).
They can actually do some genetic testing and see if this is the type you have, but most people don’t get diagnosed until after they die suddenly because they sneezed and their organs exploded. It sounds pretty shitty, especially if…. Never mind. Now’s not a good time for a poop joke.
For me: My symptoms are accelerating quickly and showing atypically, for example, last year I couldn’t walk for a month, and we weren’t able to do surgery because it was too risky.
I do have skin symptoms, which can indicate Classical, or Vascular (though it could still be hypermobile type, because EDS likes to keep you guessing). In the last year, my symptoms have shifted dramatically, and new symptoms seem to be showing up every day. Many of my doctors who specialize in EDS have never seen symptoms like mine (on top of my textbook EDS symptoms). It’s really important to me to find out if I have Vascular, and that’s why I’m doing this fundraiser to get genetic testing. While people with Vascular can have a shorter life expectancy, I’m not worried. I come from a family full of stubborn bitches who were supposed to die young and refused to. My grandma was named “Jesus Linda” (or “cute little Jesus”) because her family was praying for a miracle when they found out she was supposed to die as a child. She lived on to beat cancer twice, and be alive for long enough for me to know her as my nana (I think she lived to be about 90). My cousin Greg was supposed to die when he was 16, he’s 60. Survival is in our blood. My family doesn’t play that dying young shit, but it’s important to me to know what I’m dealing with so I can fuck the expectations of my death right the heck up.
In the entire state of Oregon, there is one geneticist who sees EDS patients, reads their charts and gene sequences or whatever, and confidently tells them what the fuck is going on. He doesn’t take insurance, and he charges $350 and hour (smells like late capitalism but okay). His intake appointment is 3 hours long. Then there is the actual test, which is thousands of dollars -- they do take insurance for that, I currently don’t have insurance, but check out the cool plan I put together after talking to his receptionist for almost a full hour:
1. Get insurance by April 4th. I found a company that might even reimburse me for the hourly charge, and should have the lowest out of pocket for the actual test. I expect the monthly rate to be about $200 per month. The first payment will be April 4th.
2. The first appointment is on April 11th, for 3 hours at $350/hour, which, yeah, is literally $1050 for three hours of this dude’s time but apparently it’s worth it and my only fucking option (I might get reimbursed partially). The $1050 is due at the end of my visit, and right now my plan is to get a receipt and hope my cool new insurance reimburses me for it. I would also like to pay $30/hr to a friend of mine to take notes and make sure I get my receipt to send to my insurance (because I will likely be busy asking questions and crying. When you have a cancer moon and a virgo rising, you gotta plan for crying). That’s and additional $90. Total spent? $1340 in one ass day. (I might be able to get $790 back if my cool new insurance lives up to my high expectations and reimburses me for the doc’s hourly rate).
3. The next appointment (April 19th-ish), is $350 because it should only take 1 hour. In this time, we talk about what kind of testing I need, and I will fill out some forms with the doc. They will then order the testing, and the kit will be delivered to me in 5 days (April 24). Then I can walk into any hospital and have them draw blood and process it.
4. The results will get to me in 10-12 weeks (in July) could only take an hour, but what the fuck yeah right I’m going to have so many questions it’ll for sure take me 2 hours, or $700.
As you can see by this chart that lays out all of my options, it will likely cost a total of $3290, and if my insurance reimburses me for doctor fees, it will only cost $1706.
I know it’s a lot to ask, but until we can get to a world where I have other options (woof!), I need your help.
Every little bit helps, I know my friendos are all broke babes, and I wish I didn’t have to make this request. I’m so excited to get a better understanding of my condition so I can live my life with one less giant daunting question.
Thank you so much for reading this, thank you to everyone who has been on this journey with me. Thank you to Lohla for doing this beautiful art of me and my cat. Thank you to everyone who donated early to this campaign.
We’re on this quest for information together. I couldn’t do this without you, thank you for donating, liking, sharing, and bumping. <3