A little About Me
Hello, my name is Lexie, I am 22 years old and I have a rare genetic connective tissue disorder called Ehlers-Danlos Syndrome. This has severely impacted my life and my entire body. The disorder pokes fun at me and does things like:
- Unstable joints ( all of them! even my toes and spine! )
- Gastroparesis; my stomach muscles don't function properly anymore, thus I'm striving to thrive on a beautiful feeding tube. (-: I have an upcoming surgery to place a permanent feeding tube.
- Pain. So. Much. Pain. Everywhere, in places I didn't even know existed or was possible. Joints, Muscles, Fascia, Organs, Teeth, Bones, even my veins hurt.
- Mast Cell Activation Syndrome; My body releases histamine cells in response to random things that can change weekly, including things like foods, lights, sounds, scents, etc. So I am always having allergic like reactions, and lots of surprises!
- And many, many more!Here's Why I Am Asking For Your Help:
One joint that is especially giving me a lot of issues, is my jaw. It is incredibly unstable and shifts in and out constantly, every day, with tasks like resting, to eating, laughing or speaking.
It causes me problems like:
- Subluxating; Jaw "sticks" when it slips out, causing a lot of pain
- Offset bite - (my teeth don't align when I close my mouth nor can I open my mouth wide enough to let anyone look inside it)
- Sleep Apnea- Subluxations in my sleep cause my airway to be constricted
- Constant headaches / Face pain / Teeth pain
- Sleep deprivation - brain fog, dizziness, and irritability come a-runnin'
- And much, much more!
Ehlers-Danlos Syndrome is very complex, under-researched and for me, a debilitating disorder. It requires understanding to properly treat without harm or at least, as little as possible. It is almost an impossible task to find medical professionals who have even heard of my condition, let alone are willing to try to understand and treat my complex symptoms. Surgeries and procedures are generally avoided in individuals with EDS unless absolutely necessary as we tend to not heal well or quickly.Another Obstacle:
The State Insurance I rely on does not cover any dental work whatsoever.
After years of high premiums and astrnomical deductibles and co-pays, I finally had to get on the State insurance to continue with my care. Today I am raising money to get myself to a Cranio-facial specialist that is knowledgeable on my condition and can help stabilize my jaw homeopathically before needing to resort to surgery. There are not many out there, but we found one 2 states away
that is extremely well versed in Ehlers-Danlos Syndrome and even travels around the world to speak and educate others about it! How cool!Here's What I Need To Do:
We will be cramming 3 appointments into 2 days since we are driving 400 miles away for treatment.
I will most likely need a Jaw Orthotic; a custom retainer that will fix my jaw alignment and bite, that I will wear 24/7. This is supposed to prevent my jaw from slipping out and causing so much pain and discomfort, and allow me to laugh, smile or eat without immediately wincing. Here's What I Need Your Help With:
- Bite Plate - an estimated $2200 (Includes 3 appointments, Consultation, X-rays, Custom orthotic fitting and casting, etc. )
- A place to sleep - $250 (For 2 nights)
- Food - $150 (For 3 days for myself and my family)
- Getting there and back - $100
I was fortunate enough to get an appointment made with this specialist at the end of November. My medical bills that have accumulated over the past 7 years have completely tapped us out, and I am hoping we do not have to postpone this treatment any longer. Any of the leftover funds will be put towards medication and medical equipment insurance does not cover.
My next big goal is to get me to Mayo or Cleveland Clinic as it has been suggested by multiple specialists in my area. But at this time, it is completely out of our league financially. Baby steps!Thank you so much
for being a part of my story. Please feel free to reach out to me by e-mail if you have any questions. This is only a fraction of my story. (-: