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, look at the tabs at the top of the page or to the right under the archives.
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 would like to donate this will take me to my gofundme page:
https://gf.me/u/x9vk85
If you want to share my story on social media, please use #chronicpainovercomer
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