Hi, I’m Kristin Amichetti, and I am excited and honored to have the opportunity to be a part of the pilot team running the Cambridge Half Marathon this November for The Endometriosis Alliance of Massachusetts (TEAM) and their fiscal agent AllPaths Family Building.
The Endometriosis Alliance of Massachusetts is an organization dedicated to improving the lives of those living with endometriosis. TEAM is a diverse group of patients and their loved ones, medical professionals, and researchers all with the same mission - to increase awareness about endometriosis, promote the importance of early diagnosis and access to effective treatment options, and advance research for this under-funded and under-researched disease.
Most recently, The Endometriosis Alliance of Massachusetts has been a major force advocating for and backing multiple bills on the table with the MA State Legislature related to endometriosis (H2527 and S.1564/S.1638 ) that if passed will help improve the systemic issues those with endometriosis face that delay diagnosis, treatment, and financial support.
As many of you may know, this is a cause which is near and dear to my heart, as after suffering in silence with severe pain and other debilitating symptoms for close to a decade I was diagnosed with severe endometriosis in 2023. It has been a difficult road, however through the years pre-formal diagnosis, and in the years after diagnosis, despite enduring 4 surgeries within 2 years and currently dealing with ongoing pain/issues possibly tied to thoracic disease, I have always come back to running as my outlet and I think it is a way to prove to myself that despite this disease, endo patients are strong and resilient as hell. I have had a fire lit within me since my diagnosis to help others facing a similar fight so to be able to combine my passion for that with my passion for running, is something I am so thrilled to be able to do.
Please consider donating to help me reach my goal of raising $1,000 for TEAM, so we can continue to make strides to hopefully improve the lives of those living with endometriosis. We deserve better; we need better - let’s find a cure!
Thanks,
Kristin
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Some Details/Information on Endometriosis:
Endometriosis is an incurable, chronic systemic inflammatory disease where endometrial-like tissue forms lesions/nodules/cysts on organs, tissues, and structures in the body. While considered a benign disease, it has shown behavior similar to malignant processes and has been found on every organ in the body contrary to popular myths that it impacts only reproductive organs.
The disease can cause severe/debilitating pain and a vast array of other symptoms depending on where it is located including but not limited to GI issues (nausea, vomiting, painful bowel movements, bowel issues, painful bloating), urinary issues (pain, frequency), if spread to diaphragm or thoracic areas it causes chest pain, rib pain, shortness of breath, shoulder tip pain, even lung collapse. Left untreated the disease can cause serious damage to the body including bowel blockage/dysfunction, organ fusing, even kidney death.
It is unfortunately a disease that can cause devastating impacts to all aspects of a person’s life, and despite this today it still takes on average 7-10 years to receive a diagnosis, with many facing gaslighting and misdiagnosis for multiple years. It still requires surgery to formally diagnose as it often evades all typical medical imaging, and there is often non-expert doctors who treat it with ineffective treatments such as ablation surgery, or medications such as Lupron/Orlissa or birth control, all of which do not stop disease progression in anyway and may cause detrimental side effects. Excision surgery, the gold standard treatment, is often inaccessible to many due to the limited number of expert excision surgeons in the country, costs associated with care, and even for those with access to these experts, they still face long waiting times to get the care they need.
There is a major need for increased awareness, education, and research on the disease to hopefully improve the time it takes to diagnose, the mechanisms to diagnose, and ultimately the options to treat the disease and hopefully one day find a cure.
Links to Check Out:
The Endometriosis Alliance of Massachusetts:
https://www.endoteam.org/
MA Endo Bills:
https://malegislature.gov/Bills/194/H2527
https://malegislature.gov/Bills/194/S1564
https://malegislature.gov/Bills/194/S1638
AllPaths:
https://allpathsfb.org/
guidestar.org/profile/04-3266589