Thanks to social media, more and more people have discovered that health problems they were once told were rare are actually not that uncommon.
One of those people is Mia, 39, who posted on TikTok about painful Bartholin’s cysts. in one Video Liked nearly 53,000 times, Mia, who asked that her last name not be shared, said she spent weeks trying to get a proper diagnosis after developing severe pain along her vulva. Mia tells Yahoo Life that after her second visit to the ER, she was finally diagnosed correctly and told at the time that Bartholin’s cysts were only just beginning to appear 2% of women. But the comments section on Mia’s post was flooded with messages from other women saying they’ve experienced the same thing.
“I have had multiple Bartholin’s cysts and they are excruciatingly painful,” shared one commenter. “The moment you said ‘hard lump’ I knew it was Bartholin’s cyst,” wrote another, before noting they “had it three times.”
“I’ve read that it only happens to 2% of women, but now I feel like it’s more,” says Mia. “I’ve seen quite a few women say, ‘Wow, I finally have a name for this thing , which I’ve been dealing with.’”
Claire Barrow, 15, understands the importance of connecting with others who have the same rare health conditions. Barrow tells Yahoo Life she wanted to help people with rare diseases after being diagnosed hypophosphatasiaa hereditary disease that affects the development of bones and teeth, in 2019. So she played a part Rare guru, a platform where people living with rare diseases can find each other. “I was fortunate to connect with someone a little older than me who had the same condition, hypophosphatasia,” she says. “Her experience was very similar to mine. … Hearing her story really made me feel seen.”
The term “rare” is somewhat confusing in the medical community. While a doctor can use it to describe something they don’t see often or that occurs much less frequently than other conditions, there is an actual definition that not everyone follows. Debbie DrellMember Director at National Organization for Rare Diseases (NORD), tells Yahoo Life that NORD is aligning what is considered a “rare” disease with a portion of the Orphan Drug Act which states that a rare disease is one that “affects fewer than 200,000 people in the United States.”
But Drell emphasizes that the presence of a rare disease or condition doesn’t mean no one else has it. “My sister Alex was diagnosed with a rare disease, pulmonary hypertension, in 1998, and at the time I felt like no one else had the condition,” she shares. “Nobody in our family, none of their friends, nobody in their small Texas town knew about this disease — let alone had it diagnosed.” But, says Drell, “the reality was that there were thousands of people living with this rare disease at the time in the country – she just didn’t know about it.”
Drell says it’s now “so common” for people with a medical condition to look online for what they’re experiencing. “It’s very valuable to connect with other people living with rare diseases,” she says. Drell notes that it can help combat the natural sense of isolation that can accompany an unknown health condition. “The contact with other people has helped my sister to be less afraid of her illness,” says Drell. “She was able to see other people living their best lives, and she learned new hacks and life skills to deal with her specific problems.”
According to Drell, when people with the same health condition connect with each other, they form a community — and that can lead to sharing information about research, clinical trials, and treatments. “A community is powerful in that knowledge is shared, support is provided, and advocacy can bear fruit,” she says. “A group is the precursor to the formation of a non-profit organization – and with this organizational infrastructure, a community can more efficiently amplify its voice to be heard by policymakers, clinicians, researchers and developers.”
After her diagnosis, Mia says she was “so desperate” to find someone who had had a similar experience. “I found a support group, gave women my phone number and said, ‘Call me,'” she says. “It was important for me to try to share what I learned and it was also nice to connect with people who just understood.”
Drell shares this advice for people living with rare diseases: “Don’t walk alone.”
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https://www.yahoo.com/lifestyle/rare-health-issues-234305200.html Women are finding out that their “rare” health problems aren’t all that uncommon thanks to social media