I've been on quite the journey to get answers for my health, but I would never imagine the answers would be a rare illness, as well as even rarer compounding chronic conditions. Over the past 20 years, through a great number of doctor and specialist visits, along with multiple procedures, I was finally diagnosed with Ehlers-Danlos Syndrome only this past year.
Some of my symptoms include debilitating pain, painful eating and drinking, vomiting, chronic fatigue, nerve damage, and pulmonary irregularity. There are many days that I, a previously top performing collegiate athlete, cannot even get out of bed due to the excruciating pain. Left untreated, EDS, along with it's numerous other accompanying diseases, will often lead to permanent nerve damage, blood clots, and even fatal organ failure.
As a mother of 2 young daughters, I had faith in God that my suffering would have purpose. I believe that purpose is to spread the knowledge of my condition(s) to not just those silently suffering in the public, unable to reach a diagnosis, but also to the medical community. I have faith that I will eventually be able to help a great many men and women be properly identified as suffering from an almost invisible illness and receive appropriate treatment.
Unfortunately, these conditions are so rare, and so little is known about how to treat them, that the only possible surgery for me in the near future is with a set of highly specialized group of physicians in Germany. These doctors have taken a deep dive over the last couple of decades to really determine the underlying causes for the pain and debilitating symptoms associated with EDS and vascular compressions. I am asking for your assistance now in not just trying to save my own life, but the lives of many others for whom I intend to endlessly advocate in the future. The goal of this fundraiser is to cover the travel and surgical cost my family will incur while seeking significant invasive surgery.
I have 5 vascular compressions that include Median arcuate ligament syndrome (MALS), Superior Mesenteric Artery Syndrome (SMAS), Nutcracker Syndrome (NCS), May-Thurner Syndrome (MTS), and Pelvic Congestion Syndrome (PCS). If you'd like to know more details about my journey or explanations and visuals about what I have, you can read my blog @ chronicpainovercomer.blogspot.com
Even if you are unable to donate, please do me the favor of seeking out and listening to others in your life who have seemingly invisible maladies. It took many rounds of "everything looks normal" tests and visits to finally find the right combination of words and procedures that led to diagnoses. There are so many in my position who are not as fortunate to have the support of friends and family that I do, and find themselves at a dead end. I want to make sure that we can eventually minimize the years of delayed diagnosis, and help to advocate for establishing effective, standardized treatment for all. Thank you and God bless.
If you want to share my story on social media, please use #chronicpainovercomer
- Megan Sherman
- Julia Lattanzio
- Elise Kitchens
- Sandra Gowens
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