Neffie McKee
Neffie McKee 9 signatures

I suffered with this disease for 17 years before receiving a diagnosis, 4 of which were so debilitating that I was not able to live a normal life. I missed work and ultimately had to stop working, I missed family functions, I felt hopeless and became incredibly reclusive and depressed. I was fortunate to never run into doctors who doubted the severity of my symptoms, however, I was never offered explanations or a diagnosis or potential treatment, instead I was told that it's "just bad luck." After finally receiving a diagnosis of severe stage 4 disease at 32 years old, it took traveling out of state to see a specialist and paying a large out of pocket sum to receive care that adequately addressed any of my symptoms, whereas my local surgeon provided zero relief from my severe pain and daily sickness. I was too sick to even leave my house most days and all she could do was shrug and tell me that it was bad luck. This is unacceptable and it needs to change. I lost years of my life, productivity, and my chance at being a mother to this disease and I still suffer the long term consequences of organ damage and scarring that I believe could have been reduced by early diagnosis and intervention. It is absolutely dismal that in 2017 women are still waiting an average of 7 years for diagnosis of a fairly common disease that has the potential to cause permanent scarring and organ dysfunction, with very few options to address the impact on quality of life. We desperately need more surgeons who are skillfully trained to address the complexities of this disease and those surgeons need to be accessible to all women who require their expertise. It's time for a change.

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