Support #myEDSchallenge and help me reach my goal!

#myEDSchallenge I have joined the May Awareness Month Challenge to spread awareness and raise funds to support The Ehlers-Danlos Society by participating in the Ehlers Danlos support challenge. Please support me by donating to my fundraising page. Together, even a small amount can make a huge difference! I was diagnosed with Ehlers Danlos Syndrome almost two years ago. It’s more than just being hyper mobile, it effects my entire body, my mind, my organs, my joints, muscles, tendons, disks, etc. I have limitations on what I can do and how often. My neck and right arm are a constant issue. My shoulders partial dislocate constantly as well as my hips. Even though I was recently diagnosed, this is something I’ve had my entire life, but has really been effecting my body the worst in the past 5 or 6 years. I had 2 herniated disks that had to have immediate operation in 2014 as one was in my spinal cord and near had it severed and the other on a nerve root. That was fixed but created other issues during healing. Finally the pieces to the puzzle were all put together as to why my body kept declining. A connective tissue disorder... my neck is a constant ache, my joints dislocate, muscle spasms, fibroma tumors on the bottom of my feet, anxiety, pops, clicks, etc. there is no cure, I just have to learn what makes my symptoms worse, and try to avoid constant movement. My neck has been inflamed since 2014. I have spinal stenosis, degenerative disks, arthritis, among so much more. As a child, I was told I was just hyper mobile, but as an adult it is way more than that. 10 years of orthodontists for my teeth, a deviated septum where I can only breathe out of one side of my nose, severe near sightedness, TMJ, insomnia, the list goes on as to what all is connected to a connective tissue disorder. My knees have began to recently lock and I have to pry them apart. My neck is now considered to be mechanical neck pain as every time I move my neck, it grinds. My shoulder blades are pained because of constant partial dislocations. I can only sit for 30 minutes to an hour and then have to get up as it irritates my hips. Brain fog, forgetfulness, aggravation because of my limits it’s all connected. My wrists, fingers, some toes, ankles, hips, shoulders, arms are hyper mobile but the worst of it is the wear and tear that’s made it impossible to do things I use to be able to do. When I first was having problems with my right arm and sent to a neurosurgeon we didn’t know until after the operation just how bad my disks were. The surgeon said my disks in my neck were the largest herniated disks he had ever operated on. He said that my neck was if I had been in a major accident, but I have never been in an accident. He didn’t know why after healing that the disks above my surgery had went bad. Now we know, now we know why I had bad leg aches as a child, why my shoulders and hips dislocate, why I have memory problems, why I can’t stand or walk for long distances, constant head aches, clicking my joints and inflammation that never goes away just to name a few. More information is being put out so now medical professionals are learning more about the condition and people that suffer from the same connective tissue disorder are finally being validated as this was once considered rare and lots of people have been misdiagnosed with other diagnoses. I honestly thought in 2014 when my arm aches so bad that it was because I was double jointed. I’m thankful my family dr sent me for testing and discovered the disk that near had my spinal cord severed. If that had not of been found, I would be paralyzed by now from the neck down. It’s not a death sentence but some days I really struggle with the symptoms. I just take one day at a time and learn what helps and what hinders me, smile through the difficulties, have my cry spells and pace myself, and even though our children all show some signs, pray that theirs never gets to the point mine is. Hopefully with more research and more awareness, we, the Ehlers Danlos communteventually will learn how to better manage the discomfort and trials.

The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders that produce a spectrum of complex problems across multiple systems of the body. Symptoms that are often seen across all types are hypermobile joints, (that can move farther than normal), stretchy skin, & fragile tissues. Each case is unique and severity may range dramatically, even within families.

The Ehlers-Danlos Society is a global community dedicated to saving & improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, & related conditions. Our goal is world-wide awareness and better quality of life for all who suffer from these conditions, regardless of geography.

• Please support me as I overcome my challenges with EDS to participate in the Ehlers Danlos Society EDS awareness month challenge in May by donating. Thank you!