Intro:

Hello everyone. My name is Peter Krespan, if you don't know me. I am raising money to support my fight to recover from spinal instability. Any money raised will go towards helping me get further treatment (surgery), as well as pay leftover medical bills and expenses I have incurred from seeking care (travel and such). Medicaid only covers in state care, and it's looking like I may not be able to get the next surgery I need with the local doctor I see, as he is not a specialist, and it definitely won't be in time to preserve neurological function, which I continue to lose every day.

I hope you're doing well. I wish I could say the same, but for the past few years, I have not been. These last few years of my life have been a nightmare health wise. I don't say that lightly, knowing how much people suffer in this life, which I witnessed working in healthcare for years and encountering other people with similar physical illnesses as me online. I've had continually worsening health problems that have disabled me and left me with little quality of life. I haven't been able to work in 3 years, as well as engage in any aspect of life other than managing physical illnesses. I have endured suffering exponentially times what I knew was possible for the human body to go through, and am continuing to seek treatment, but have ran into monetary issues, and finally was given the confirmation by my disability lawyer that I can make a gofundme.

My conditions:

The doctors say I have Ehlers Danlos Syndrome, a genetic connective tissue disorder, and it has given me the gift of many symptoms and syndromes, the most disabling one being spinal instability, the most symptomatic of it being in my "cervical spine" (my neck). It has taken away my quality of life. This wasn't discovered until the past few years, as I reacted much worse than one would expect to a car accident some years ago, and have progressively worsened since. They suspected it and other related connective tissue disorders when I was young (mainly Marfan's syndrome), as multiple joints would dislocate easily, other health problems kept popping up, and I looked more Marfanoid when I was younger, but they didn't diagnose me or look further, as many doctors have a misled belief that this doesn't help treatment or symptom prevention (even though I would've been much safer my whole life if I had known and been able to access proper care). I have many other conditions from EDS, but will keep this focused on the most problematic that I need surgery for.

Before, my conditions were somewhat manageable, and I could live a good life. But after a car accident, I progressively have worsened, and can't work or really take care of myself. To be frank, I can barely live right now. I have a host of neck problems because of my condition and the car accident, and the suffering these problems cause have brought me to my knees every day. I've only gotten worse symptomatically with every conservative attempt at treatment we've tried. I cannot adequately describe the suffering I have endured, as I am still too sick. This alone has taken multiple days to write. If you would like to grasp the nature of it as much as one can quickly, you can google "atlantoaxial instability", "craniocervical instability", and "Ehlers Danlos Syndrome", and at least some of the pertinent information will be explained. I'll briefly tell some aspects below.

What I experience, briefly:

Most of my effort is spent on positioning my body and head to avoid the positional symptoms as much as I can. Every second of every day I experience neurological and orthopedic symptoms that would send anyone to the ER in terror, so of course I spend all my time managing it and working to stay sane while experiencing it. It feels like I'm in a prison under my face. Relaxing my body in any way makes my symptoms worse rapidly, and is torturous, so there really is no comfort to be had with this illness. It feels like I'm constantly holding together a failing structure, and even the slightest physical change causes it to crumble to the ground and cause nightmarish neurological symptoms. I have to stay in this small window of not being relaxed while also not being so tense that my head begins to try to spasm and spin off my shoulders like it constantly tries to do (muscle spasms and torticollis from cervical instability). I have many neurological symptoms that affect my ability to function at any given time. My ability to control the right side of my body shuts on and off constantly throughout the day depending on where my spine is shifting in any given moment. This constant shifting and cracking of my neck precipitates all my symptoms. Turning my head worsens everything tenfold, even making me black out if held for too long. My symptoms are at a level that I can't even fathom, even while experiencing them for so long. Every day is genuinely traumatic. I wish I could say otherwise, because again, I don't say that lightly.

Why crowdfund:

I had seen EDS specialists, but trying conservative treatments before surgery made me run out of COBRA insurance and end up having to get on medicaid, unable to go back to the specialists. I had one surgery with a local surgeon, but he feels out of his depth and is struggling to know what to do next. The specialists I saw experienced with my rare illnesses see a path forward, but money and insurance block my ability to see them, hence the gofundme. Medicaid only covers in state doctors, and being in Delaware means theres no specialists for most rare conditions, especially one's whose diagnoses and treatment are difficult and nuanced. You can sometimes petition to have medicaid cover the costs of seeing an out of state specialist, but said specialist has to agree to be paid out by medicaid, and most do not. This also is a very lengthy process, and is typically denied for people with my conditions, as "technically" any neurosurgeon can perform the surgery needed, they just don't have the expertise to diagnose and do the surgery in the context of all connective tissue disorders. I also will continue to incur medical and life costs that I cannot afford while I'm in the fight to get disability payments, which has lasted over a year at this point.

What donating will help with:

All of my savings is gone, and my parents have spent an equal amount. If you could donate to my gofundme, it would either:

1. Enable my parents to get me supplemental insurance in hopes of getting another surgery with a specialist for my conditions, or

2. Let me be able to pay for a specific scan that is expensive because it's out of state and specialized, to get me one step closer to convincing my current surgeon to again do what the specialist recommends, or

3. Go to the specialist and pay out of pocket if worse comes to worse and I have no other options, or

4. Go to the endless medical expenses and life costs that I still have to pay or will end up having to pay as I get more treatment.

Thank you, from the bottom of my heart:

I deeply appreciate it, it helps more than anyone can ever know. I truly want to live. I want to work and contribute again. I want to be there for those I love, and those that need someone to love them. I want to help heal the world with my presence in it. And at the core, I just want to BE, with even a slight semblance of comfort. That has not been the case for years. Donating can help get me closer to this chance.

If you are unable to donate, I completely understand. In lieu of a donation, please take care of yourself even more this week, as this Iife is fleeting, and love should be the spirit in which it is faced, including towards yourself. Much love to you and yours.

Peter Krespan