Wilmington woman raises endometriosis awareness
BRATTLEBORO >> After several surgeries, passing out from pain and feeling unheard, one local woman is using her struggle to let others like her know that they're not alone.
Endometriosis, or "endo," is a painful and chronic disease in which tissue that's supposed to grow inside the uterus grows on the outside. With no known cure or cause, it affects one in 10 women worldwide, which includes approximately 6.3 million in the United States.
Sarah Blair, 28, of Wilmington, is part of that statistic, but she wants people to know that the disease is not a definition of someone's identity and there is support and hope for better days. To further educate and create a community of support, Blair's nonprofit organization, The Three C's Foundation, is hosting a walk for endometriosis on Saturday, Aug. 20, from 10:30 a.m. to 12:30 p.m., starting at Brattleboro Savings & Loan on Main Street.
"I think this walk is important for our community because all though doctors do their best, the disease is still so perplexing, a lot of info is not accessible to our doctors and there are specialist for disease, but few and far between," said Blair.
Before the walk begins some local business will be hanging young yellow streamers (the color for endo awareness) outside of their stores starting this Sunday, until the day of the march. Other local businesses can still jump on the bandwagon if interested.
But this event is not just about raising awareness, says Blair. She states it's also to let other women with endo know they have support and "it's OK to not be OK." Blair continues to live through the pain and was "officially" diagnosed at 18 but experienced extreme discomfort for three years prior to her diagnosis.
Blair has used her story to rally other women by creating a support group where women with the disease can talk about their struggles in a trusted environment. She also formed a 24/7 online support chat where woman can form partnerships with each other, advocate for each other and raise awareness about endometriosis. This is all done under her nonprofit organization.
"We believe that together we Care, together we can Cope and together will we Cure Endometriosis. The foundation is a support and awareness group for women with endometriosis," states its mission statement.
These monthly meetings began about a year ago and continue at the Keene (N.H.) Public Library. Blair says these monthly meeting have helped her become social, be positive and find something proactive to do with her time. But her story shows that it was not an easy road to reach that level of confidence.
"I missed a total of 172 days of school between junior and senior year of high school. I went from an active teenager who did track and field and played field hockey to doctors telling my mother I was just trying to get out of school. But that wasn't the case, and fortunately my mom believed me and not them and she kept fighting for me," Blair said.
Two of the hardest symptoms to live with are chronic pain and infertility.
Her pain became so bad, that she said she became a "liability" to her school. She retold a time where she was climbing the stairs at her high school — at one moment, she remembers being at the top of the stairs and the next she was at the bottom with people crowded over her. She had passed out from the pain. Then at a school dance on a date with her former crush, she passed out from pain.
"Teachers asked me what drugs I was on, but that wasn't the case," Blair said.
She was sent to the emergency room.
Her school sent her home until the doctors figured out what was troubling her. She had a surgery for something unrelated and that's when doctors diagnosed Blair with endo. The cause of endo is unknown and it cannot be diagnosed through scans or tests. Doctors detected that she had endometriosis when they saw scarring and lesions, which the disease creates, on the uterus. This occurs when tissue, which lines the uterus, is found outside of the uterus, usually on the abdomen, ovaries, fallopian tubes and ligaments that support the uterus.
Upon Blair's return to high school, she was not exactly greeted with a warm welcome.
"When I came back from surgery, I was a senior in high school; a lot of kids had started rumors I was in rehab or pregnant. I went from loving school to hating it," said Blair.
Her disease caused her to delay her college education because "What professor is going to give you that kind of time off?" In August, just a few months after her high school graduation, Blair was told by doctors she needed surgery on her right ovary because it was two times the normal size. She quit her job and was on bed rest. When she finally did make it to college that January, she had another incident and was rushed to have to the ER at 2 a.m. for a massive cyst that was about to rupture on her left ovary. The growth was all around her intestines and up near her appendix.
"Doctors was told me I had stage 4 endometriosis and needed to learn to live with this," Blair said.
She notes the average person with endo may have surgery once a year, but she managed to have three within a year and now doctors are hesitant to perform further surgeries on her because they fear it will irritate her body. At 28 years old, she still endures the pain and said she copes with it through a "mind over matter" approach.
"I need to tell myself this is not who I am, this is just a burden. This a burden I can deal with. If I need a hot pad and need to take my pain medicine, it's worth to do that rather than hurt myself further. And know that when I have a good day, I will be able to walk with my husband and dog. I'm not this disease, I'm more than this and I learn to deal with it," Blair said.
Blair also says that one of the biggest misconceptions about the disease is that pain is just due to menstruation.
"Women with endometriosis are often afraid to speak about it because of the nature of the disease," said Blair. "They're embarrassed and don't want to hear from others 'It's just cramps.' That's not true. It's not just when menstruating — a good portion of people feel pain throughout the month. It doesn't just effect female organs, also the intestines, bladder and more."
She notes some people have symptoms of migraines and back pains. Blair herself has issues with walking because she said there is something pushing on her sciatic nerve.
Blair notes while this event is free, The Three C's Foundation is open to donations, which support the cost of permits needed for awareness walks, insurance, maintaining the website and maybe someday day for the care packages Blair provides to those with endometriosis out of her own pocket.
In the future, Blair says she hopes to create a support group for family and friends who have a loved one with the disease.
"My hope is to have support for them as well — it may affect us directly, but it indirectly affects family and friends. My husband can't stand the idea of me in pain. They're stuck, too, and don't know what to do," Blair said.
To learn more about the The Three C's Foundation, visit carecopecure.org. For questions or to get involved contact Sarah Blair, the founder and adminstrator of the foundation at firstname.lastname@example.org or 802-380-6925.
"Whether dealing with it directly or you're on the outside looking outside in, we need to put an end to these misconceptions," said Blair. "No one should be judged or ashamed for hurting. "
Maddi Shaw can be reached at 802-254-2311, ext. 275
TALK TO US
If you'd like to leave a comment (or a tip or a question) about this story with the editors, please email us. We also welcome letters to the editor for publication; you can do that by filling out our letters form and submitting it to the newsroom.