What is Ehlers-Danlos Syndrome https://www.ehlers-danlos.com/what-is-eds/
The questions I asked Katie are bold and italized. Please bare in mind this her journey and please be respectful of that. She lives with hEDS and possible vEDS.
Where are you from tell me a little bit about yourself. What is your name, age, and disease/invisible illness/mental health?
I’m from the US, I’m Katie, I’m (almost) 18 (so just say I’m 18 please), and I have Hypermobile Ehlers-Danlos Syndrome. I was diagnosed in 2010, but now we’re questioning that diagnosis. We suspect that I may have the Vascular type is EDS, or, if you can believe it, that I may have Vascular EDS and Hypermobile EDS.
When did life change for you?
My health was declining at a slow and steady pace throughout my childhood years, but it went spiraling downward in 2014, when I was 14 years old. My first major symptom of EDS (which lead to a diagnosis), was unexplainable, constant, chronic knee pain. That was in 2010.
What was life like before diagnosis?
Lovely. Lively. Luxurious. I used to love running and dancing, but, after my diagnosis, it all had to stop at some point. I was doing damage to my body.
How has your diagnosis changed your life?
It’s made me scared that I may not get treated because I have a pre-existing condition (EDS). In America there was recently a debate about insurance coverage and healthcare laws about pre-existing conditions.
Please describe the best you can a day in the life of you?
I wake up from a night of poor sleep and pain. I get out of bed, dislocating my hips and shoulders and subluxating my knees in the process. Snap, crackle, pop. My bones are made of glass, my muscles are made of… cucumber meat, and my skin is made of tissue paper. I have chronic pain all day everyday. I can barely breathe without a rib dislocating. My hip bones will not stay located to my sacrum. Physical activity is basically but a dream at this point. School is very difficult, as I am so fragile. It’s hard to focus and pay attention because of the distraction of chronic pain. Oh, and food. Although I don’t have gastroparesis (which we’re not even 100% sure of), we’ve done all kinds of GI tests, and they all come back fairly normal, yet I still cannot hold down anything–not even water–without feeling nauseated, or like I have to throw up. Luckily I’m still able to keep down food, even though there’s nausea, but it’s very annoying to feel like I might throw up all day. I also have POTS and VTS, so I faint a lot. And by a lot, I mean a lot. Once or twice in English class, three times in Astronomy, two more times in math… you get the gist of it. Sometimes I can’t focus on my school assignments, not just because of pain, but because of lightheadedness and fibromyalgia brain fog. This can easily lead to anxiety, which I believe also has to do with dysautonomia. And after multiple joint dislocations throughout the day, I go to bed. Laying down exacerbates subluxated-rib pain, though, so going to sleep isn’t that exciting for me, like it is for most people. Usually I wake up in the night with random joints dislocated. Sometimes it’s hard for me to even fall asleep, because we suspect that I have Chiari malformation, and so when anything presses against the back of my head (even my pillow, and especially my neck brace), I get a migraine. It’s yet another night of pain and poor sleep, and the cycle repeats.
What was/is the most challenging thing you have faced because of your diagnosis?
Pain. Lots and lots of pain.
Also seclusion, because I have to stay at home a lot and cancel plans at the last minute. It’s hard for me to go out. School is already enough, as if I didn’t have enough pain on my plate before school even started and all I did was stay home for months on end. Church sadly has to wait until I feel better, which may not be ever. My friends don’t really come to visit me, but that’s understandable because we’re at the point in our lives where we should be moving on and starting fresh. We’re going to college and getting jobs, juggling school along with all of that.
I also struggle with loss. Because of EDS, I can’t run, I can’t dance, I can’t play sports (I can barely walk without pain), I can’t move without joints dislocating, I can’t eat without complications, I can’t have children, I can’t drive (because I might faint at the wheel), I can’t focus on school, and I can’t work. I basically lost my life.
Do you find that you can keep up with others?
Well, if there are accommodations, maybe. I use the elevator at school, and sometimes my wheelchair. I take ADD medicine, but that doesn’t help the fact that my chronic pain is a very big distraction. I can’t drive and I can’t work, so I’d say sort of, but not really. My “privilege” of being homeschooled sometimes, being allowed to eat in class, using the elevator at school, etc. are not really privileges. They are accommodations. Without them, I wouldn’t even be CLOSE to “keeping up” with my peers. I do have a lot of time to sit around and study, though, since I can’t really go out.
I’ve actually had people say to me, “You must feel so lucky that you get to be homeschooled,” and, “It must be nice getting to use the elevator.” No. Just no. You do not want to be in chronic pain 24/7. There’s the door.
What would you tell others living with your diagnosis?
Please research comprehensive prolotherapy. It is a treatment for EDS patients that may work for you. Like chemotherapy does not work on all cancer patients, there’s a chance that it may not work for an EDS patient. But it’s still worth the try. I’ve been undergoing these treatments for almost a year now, and I’ve had a lot of pain relief. I go to Caring Medical in Fort Myers, Florida once every month or two for comprehensive prolotherapy treatments with sedation. My doctor is a great doctor, Doctor Ross Hauser. I’d trust him with my life. In fact, that’s kind of what I’m doing! I’m sedated for these treatments because he basically treats me like a voodoo doll, to sugarcoat it. But it’s turning out to be worth it for me.
Basically, I receive hundreds of injections at each visit. The injections are supposed to help stabilize my joints. These injections can also be for other injuries like sprains and tears. Comprehensive means full-body, and so it’s injections throughout a large part of my body (rib cage and spine), thus using a lot of solution, resulting in around 200 injections in one treatment. The “prolo” in “prolotherapy” comes from the word “proliferation.” That’s the goal of this treatment: to cause proliferation of the connective tissues (collagen). This is done by injecting an inflammatory solution into joints. The temporary pain and inflammation is worth it. The brain is supposed to respond to the pain signals by “healing” that area, which creates collagen! Making our joints like they were before they were worn down! Like when we were children!
What would you like to tell others that don’t live with a similar diagnosis?
Offer support and ask questions.
Specifically, DON’T suggest medications that worked for your friend’s brother’s cousin’s cat’s neighbor. Don’t say, “You’re too young to be sick.” Don’t say, “It’ll get better.”
Please do offer to look up the condition to educate yourself on what it is. I mean, in-depth research isn’t what I’m asking. But if you don’t understand what I say my condition is when I explain it to you the first time, just look it up for a minute and see what it is. Know that a chronic illness patient can’t help their pain, they can’t help that they sometimes have to cancel plans at the last minute, and they can’t help that they’re sick.
What have you learnt on your journey?
“Good health is a crown that healthy people wear and only the ill can see it.”
That’s a really humbling quote that I saw on social media, and it’s a nice reminder to, you know, not take your life for granted. It turns out that it’s an Arabic Proverb.
Is there anything you would like to add about your journey?
I want to always keep in mind, and I want others to always keep in mind, that the sun goes down, but it must rise again. In other words, there will be highs and lows, but you can’t get through the lows of you give up. Ask God for strength to keep your head up.
“What do you do when a chapter ends?
Do you close the book and never read it again?
Where do you go when your story’s done?
You could be who you were or who you’ll become.
If it all goes wrong
Darling, just hold on.
The sun goes down
and it comes back up
The world–it turns–
no matter what
If it all goes wrong
Darling, just hold on.”
(“Just Hold On” by Louis Tomlinson and Steve Aoki)
Thank you Katie for sharing your journey and your inspiring words. Thank you so much for sharing about prolotherapy. Your journey and story has touched me and I am sure it will touch and inspire others. Keep moving forward. -Anna