Help me Survive EDS

My name is Mario, and I’m creating this GoFundMe to primarily help to pay for prolotherapy, an experimental treatment that has had success in helping people with Ehlers Danlos. Other uses for donations include affording a place to stay, visiting doctors, and seeing specialists. However, I also intend to use any help I can get to help me survive a string of bad luck that having this disease has brought my way.

I’ve had plenty of chances to think of how to explain what Ehlers Danlos is, and the explanation that I often land on is a lack of good collagen production. Since all joints rely on tendons and ligaments (composed of collagen), they tend to become very weak and sub lux or dislocate pretty quickly; the constant trauma on those soft tissues leads to tears that make the use of my body hard or impossible. Sometimes picking up something from the floor could mean the difference between no pain or an ER visit. In addition, those ligaments and soft tissues aren’t limited to just physical aspects; internal organs and mental functions are also involved, decreasing my ability to think and even do sedentary tasks.

In the course of 4 years, I have seen myself go from someone who would willingly work 60+ hours a week at work, worked out three times a week and went on hour-long walks almost daily to someone unable to hold on to a job, unable to get out of bed most days, and sometimes unable to type a message on my phone. The typing and creating this GoFundMe have been a task for two months. I don’t have the strength to sit on a chair for more than 20 minutes at a time most days.

The toll this deterioration has had on my mental health is astronomical; I have slowly seen myself become angry, depressed, and impatient, and it's all due to losing my ability to take care of myself. I feel like a spectator, unable to take part in the world.

I moved to Ohio in 2018 with my newfound partner in the hopes of creating a new life; however, what I got was the exact opposite. My declining physical and mental health made the relationship very draining for my partner, and eventually, they decided to break things off. I was not a pleasant person to be around, constantly mourning my life and not knowing where the bar would stop. Once I thought my symptoms calmed down, something new would break. It was never my intention for them to become my caretaker. Still, slowly as I lost function of all my limbs, I became more limited on the tasks that I could do, eventually needing her assistance with most grooming and caretaking. Even with the things I should be able to do, I’m constantly riddled with brain fog; my constant anxiety and depression make me insecure to do simple things like a phone call, as I would often looser information and briefly even forget the purpose of my calls. I lost confidence in my ability to do the most basic tasks.

I relied on my partner for housing; we also shared a car, for which she eventually became the one stuck with making the car payments. Having separated from my partner, I have to move out of the house, a challenging prospect as I realize I am not physically capable of moving my things. I am unable to pick up something off the floor now, I use a grabbing device, but if the object is too heavy, I will not be able to pick it up. I can’t even go looking for a house. I feel trapped in an inescapable situation. I’m new to being disabled, so I have a lot of heavy things back from when I was able-bodied that now simply encumber me, I don’t know anybody that could help me move out in the nearby area. I most likely will need to pay someone for help.

We used to share a vehicle, but it is now being considered to be sold. I don’t have much say in the matter, as I didn’t contribute as much to its payments. If I were to lose vehicle use, I wouldn’t be able to attend my doctors’ appointments or attend school, I had tried public transportation when I was able-bodied, but I often found myself falling as I couldn’t find a grip on the handles or lacked the strength to hold myself up and finding a seat isn’t always guaranteed. In order to go places, I will have to rely on services like Lyft and Uber, which will add on. I will attempt to reach an agreement where I can take responsibility for payments in exchange for staving off selling the car, at least until I finish my last year of school or until I can see if prolotherapy allows me to walk.

At this point, I am applying to get disability and rental assistance, a prospect that can take a while and in cases like mine, it’s tough to get. It’s not uncommon to hear the process takes years, and most of the time it gets denied. I, unfortunately, do not have that timeframe. As Ehlers Danlos isn’t a disability typically covered by Medicaid, those who have gotten disability usually do because the other symptoms associated with it are what gets recognized.

Since I am mainly asking for help with Prolotherapy, I’ll attempt to explain what it is. It’s an experimental treatment not approved by the FDA (so insurance wouldn’t cover it) that has had some success in helping with instability in some of the patients who undergo this procedure. Several people with EDS who have experienced it have said it allowed them to reclaim a degree of independence and self-care. Through dextrose or some other ingredients usually tailored on a patient-by-patient basis, ligaments and joints in the body tighten up and become less unstable. In some cases, particularly those dealing with EDS, the use of PRP becomes necessary, which is exponentially higher in cost.

Patients with success recommended doing Prolotherapy first and then switching to PRP. Since just about every joint in the body is compromised in some way, I will have to several treatments, most likely for the rest of my life.

In addition, the use of Prolotherapy and PRP alone would not help my cause, I will also need to see a cervical chiropractor (not covered by my insurance) and rounds of PT to help stabilize my joints (I have had PT before, so I am out of visit with my insurance, adding to the cost) to truly help my situation.

My initial searches from places that administer this procedure were giving me estimates of $10,000; asking other patients about this, they mentioned it’s not uncommon to hear charges of up to $20,000. I have looked around other places, with some going up to $7,000. I currently decided to a place that is looking to charge close to $900 dollars per prolotherapy treatment every couple of months. Looking at the areas I am looking to do, most of my estimates are not coming short of $ 10,000 minimum. This is without including the charges I will need to face for housing, transportation, and PT. Accounting for that then, it reaches around $20,000.

There will be some days where I may be able to walk and move some things, but for every task I can do, it’s only about a month or two until I injure myself doing that same task. Eventually, I will lose my ability to do it. I have seen that happen with bathing, cooking and slowly also doing any grocery shopping.

Looking at my goal, I feel discouraged because of the large amount of money I would need to be able to exist, I have lived these past years in a very dark place, and I know the most challenging part is yet to come. There is a variety of other symptoms and areas of pain I have because of EDS (vision, teeth, stomach, and nerve damage). However, all I need is some stability in my body. For the most part I have a handle on the issues EDS is causing on my internal organs but have lost the battle with the external structures. I am not asking for a new body, for a new life, I just need to have a line in the sand in which my disease will not make my stability worst. I am in my last year of university; I am lucky enough to have good grades which supplemented with student loans will allow me to attend. My degree is in Computer Programming, which will give me a chance to have a sustainable job I can do without many opportunities to hurt myself. If I can just finish my degree and regain some my stability back, I should be able to stand on my feet. I just need to survive this last year (Fall 2022-Spring 2023).

I have tried looking for a job but usually a new injury will happen which will make me unable to do the job I was applying to do. I always keep coming to the same conclusion. I need an intervention, I need to do something that will stabilize me. People with EDS have poor recovery from surgeries, so its not something I wanna risk, especially with so much typing ahead of me. Anything helps, and with enough time, there could be more donations, but any amount that exceeds nothing is already progress I can make in toppling this task. Anything above $ 0 is something, and that’s what I should be focusing on.

This has been a lengthy description of the last 4 years of my life, if you read through it all I am very thankful for it. If you are able to help me, any amount would help, there is no amount too small, and even if you aren’t able to, anything you can do to raise awareness for this cause will also be helpful. I apologize for any errors in grammar I may have righting this, its usually a race to type something before I loose the ability to do it.

Help me survive EDS and this coming year.