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Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine
Already appearing on must-read lists for Bitch, PopSugar, BookRiot, and Autostraddle, this is an exploration of women navigating serious health issues at an age where they're expected to be healthy, dating, having careers and children.
Michele Lent Hirsch knew she couldn't be the only woman who's faced serious health issues at a young age, as well as the resulting effects on her career, her relationships, and her sense of self. What she found while researching Invisible was a surprisingly large and overlooked population with important stories to tell. Miriam's doctor didn't believe she had breast cancer; she did. Sophie navigates being the only black scientist in her lab while studying the very disease, HIV, that she hides from her coworkers. For Victoria, coming out as a transgender woman was less difficult than coming out as bipolar.
And because of expectations about gender and age, young women with health issues must often deal with bias in their careers and personal lives. Not only do they feel pressured to seem perfect and youthful, they also find themselves amid labyrinthine obstacles in a culture that has one narrow idea of womanhood.
Lent Hirsch weaves her own harrowing experiences together with stories from other women, perspectives from sociologists on structural inequality, and insights from neuroscientists on misogyny in health research. She shows how health issues and disabilities amplify what women in general already confront: warped beauty standards, workplace sexism, worries about romantic partners, and mistrust of their own bodies. By shining a light on this hidden demographic, Lent Hirsch explores the challenges that all women face.
Already appearing on must-read lists for Bitch, PopSugar, BookRiot, and Autostraddle, this is an exploration of women navigating serious health issues at an age where they're expected to be healthy, d...read more
Summer’s Complaint: My family’s courageous, century-long struggle with a rare genetic cancer syndrome
Familial Adenomatous Polyposis, or FAP, accounts for roughly 1 percent of hereditary colorectal cancer and carries an extremely high lifetime risk of colon cancer and elevated risks for other exceedingly rare cancers. It is an autosomal dominant condition caused by germline mutations in the adenomatous polyposis coli (APC) gene. By the age of fifty, nearly 99 percent of untreated FAP patients will have developed cancer.
This is the dark shadow that has lingered over one family since at least 1911, when a matriarch was first seen at the Mayo Clinic in Rochester, Minnesota for symptoms that would become commonplace in her descendants. Three of her five children died in their thirties with what they’d come to call “summer’s complaint.” Her granddaughter, genetically programmed by a defect on her 5th chromosome also developed cancer, which would ultimately take her life.
Familial Adenomatous Polyposis, or FAP, accounts for roughly 1 percent of hereditary colorectal cancer and carries an extremely high lifetime risk of colon cancer and elevated risks for other exceedin...read more
patient stories
12 Years Old With ‘a 100 Percent Chance’ Of Getting Cancer
Ansleigh Adkins was fast-tracked for surgery when doctors found her colon carpeted with polyps. She has a genetic disease called FAP, familial adenomatous polyposis, which makes colon cancer inevitable.
Ansleigh Adkins was fast-tracked for surgery when doctors found her colon carpeted with polyps. She has a genetic disease called FAP, familial adenomatous polyposis, which makes colon cancer inevitabl...read more
7 Incredibly brave people living with rare diseases
Living with a rare disease can be a lonely experience. There aren’t the same resources available, or enough awareness about the difficulties they face. These brave people might make up a small percentage of the population, but they deserve huge recognition.
Which is why ostomates in our community inspire us; they overcome almost impossible daily challenges to prove how much can be accomplished despite limitations. Here are seven incredible survivors living with illnesses you probably never heard of.
One of Chelsea's biggest challenges is finding a doctor in Ohio who specializes in FAP. So instead of office visits, she meets with her physicians via phone and Skype. Every year, Chelsea has a colonoscopy to check if FAP has spread to other areas of her gastrointestinal tract. She also faces dietary challenges that vary from day-to-day.
Living with a rare disease can be a lonely experience. There aren’t the same resources available, or enough awareness about the difficulties they face. These brave people might make up a small perce...read more
Celebrating 20 Years Since He Was Diagnosed With Colon Cancer, With Kris Thompson
It’s been 20 years since Kris Thompson was diagnosed with Colon Cancer at the age of 18.
From his blog, Papa’s Got a Brand New Bag, here’s how Kris told his story:
“I’m going to lose my hair?!?!” Those were the first words that came out of my mouth when I learned I had cancer. My grandmother, mother and uncle all had either a partial or total colectomy due to F.A.P, and were all diagnosed at a much later age than I without any traces of cancer. With that being said, why would I even entertain the thought of cancer, I mean I was barely eighteen for Pete’s sake. Besides, what eighteen year old develops colon/colorectal cancer?
It’s been 20 years since Kris Thompson was diagnosed with Colon Cancer at the age of 18.
From his blog, Papa’s Got a Brand New Bag, here’s how Kris told his story:
“I’m going to lose m...read more
colleen mitchell’s story
My name is Colleen Mitchell and I am so much more than a cancer survivor. I am a wife, daughter, sister, friend, and teacher. I live in Boston, MA with my wonderful husband and am a teacher in the Boston Public School Department. I live close by to my parents, brothers, sister-in-law, two amazing nephews, and two goddaughters. All in all, I am blessed with amazing family and friends.
My name is Colleen Mitchell and I am so much more than a cancer survivor. I am a wife, daughter, sister, friend, and teacher. I live in Boston, MA with my wonderful husband and am a teacher in the Bos...read more
daniel shockley’s story
Shockley wants to spread the information about his diagnosis and experience so he can inspire others to get the screening and be aware of the condition. Additionally, there is not a lot of information about AFAP available, so he hopes that talking about his diagnosis will help the medical community.
Shockley wants to spread the information about his diagnosis and experience so he can inspire others to get the screening and be aware of the condition. Additionally, there is not a lot of information...read more
diane’s story
I was devastated, I had made all my arrangements for my family during my recovery and now I would have to reschedule. Familial adenomatous polyposis (FAP) was mentioned at this stage, but I didn’t receive any more information.
I was devastated, I had made all my arrangements for my family during my recovery and now I would have to reschedule. Familial adenomatous polyposis (FAP) was mentioned at this stage, but I didn’t r...read more
faces of blue: dee henschel
My name is Dee. Although I never had colorectal cancer, I was diagnosed with Familial Adenomatous Polyposis (FAP) when I was 22 years old. I had a total colectomy IRA surgery when I was 23 as my colon was carpeted with polyps. I accepted my diagnosis and went with the flow of getting my scopes (Both gastro and sig. scopes) every 6 months. It was just an adjustment I had to make with watching what foods I ate.
My name is Dee. Although I never had colorectal cancer, I was diagnosed with Familial Adenomatous Polyposis (FAP) when I was 22 years old. I had a total colectomy IRA surgery when I was 23 as my colon...read more
faces of blue: vanessa truog
I am 36 years old. For the past six years I have suffered from Interstital Cystitis and I was actually going to venture into Stem Cell treatment when my FAP/Colon Cancer diagnoses happened. Over the years, ever since I was maybe 22, I had problems that were similar to IBS, I was told that was what I had, even when I was never given a colonoscopy.
I am 36 years old. For the past six years I have suffered from Interstital Cystitis and I was actually going to venture into Stem Cell treatment when my FAP/Colon Cancer diagnoses happened. Over the y...read more
Familial adenomatous polyposis monitoring, Whipple procedure gave my husband more time
When he was 15, my husband Jesse underwent a colectomy, a procedure that removed his colon. Jesse opted to do this after learning that he had familial adenomatous polyposis (FAP), a genetic condition that caused him to develop polyps throughout his gastrointestinal tract and put him at increased risk for colorectal cancer.
This past summer, the pathology report on a polyp removed from his duodenum showed high-grade dysplasia, meaning the polyp looked more abnormal – and more like cancer. Dr. Lynch immediately sent us to Dr. Matthew Katz, who said Jesse needed to undergo a Whipple procedure, a surgery to remove his gallbladder, duodenum as well as a part of his pancreas and stomach.
When he was 15, my husband Jesse underwent a colectomy, a procedure that removed his colon. Jesse opted to do this after learning that he had familial adenomatous polyposis (FAP), a genetic condition ...read more
ivette moya’s story
Hi, my name is Ivette Moya. I live in Pembroke Pines, Florida. I was 30 years old in February 2012 when this unbearable pain started on my lower left abdomen. I dealt with it about 8 days until I could barely walk. My husband took me to the hospital I usually went to and was told that I had a small ruptured ovarian cyst and I was impacted. They sent me home with Vicodin that didn’t help, without flushing me, without a CT scan. They told me to see my GYN on my next visit.
In the following weeks, we met my surgeon, Dr. Henry Lujan, of Jackson South, who’s amazing. It was confirmed that I did have stage II cancer, I did have FAP (colon full of polyps…my stomach is also full of polyps) and my colon had to be removed in its entirety, including my rectum. Everything Mt. Sinai said was absolutely correct. I had a total colectomy with ileostomy on April 25, 2012. I had the reversal of the ileostomy on June 12, 2012! After the surgery I was cancer free and didn’t need any chemo at the time.
Hi, my name is Ivette Moya. I live in Pembroke Pines, Florida. I was 30 years old in February 2012 when this unbearable pain started on my lower left abdomen. I dealt with it about 8 days until I coul...read more
Jennifer Cross Johnson – F.A.P. Won’t Keep her Down!
Jennifer Cross Johnson, who struggles with her Familial Adenomatous Polyposis, depression waxes and wanes with pain and health. Like many patients, she was misdiagnosed for 14 years and has endured removal of her gall bladder, thyroid and colon.
Jennifer Cross Johnson, who struggles with her Familial Adenomatous Polyposis, depression waxes and wanes with pain and health. Like many patients, she was misdiagnosed for 14 years and has endured re...read more
joanna’s story
Joanna’s diagnosis of attenuated Familial Adenomatous Polyposis (AFAP), and the implications for her family.
A diagnosis of attenuated familial adenomatous polyposis (AFAP), an inherited form of bowel cancer, was eventually made in Joanna’s family after she was found to have multiple polyps and subsequently searched for information herself and requested specialist help. As well as having to come to terms with the implications for her own health, her story reflects her motivation to obtain a definitive diagnosis and to ensure her family were also aware of the implications to their health.
Joanna’s diagnosis of attenuated Familial Adenomatous Polyposis (AFAP), and the implications for her family.
A diagnosis of attenuated familial adenomatous polyposis (AFAP), an inherited form of ...read more
joe jung’s story
After my colonoscopy, I was devastated with the results. I had a minefield of thousands of polyps. Most were precancerous and quite large. I also had several other spots of concern in my colon and rectum.
After my colonoscopy, I was devastated with the results. I had a minefield of thousands of polyps. Most were precancerous and quite large. I also had several other spots of concern in my colon and rec...read more
Jon Olis’s Story
After being misdiagnosed with hemorrhoids at age 30, six years later Jon was diagnosed with Stage III Colon Cancer and F.A.P. The focal point of his fight - watching his kids grow up and growing old with his wife. The vehicle for that fight - competitive mountain biking. For him, he is literally "riding away from cancer.
After being misdiagnosed with hemorrhoids at age 30, six years later Jon was diagnosed with Stage III Colon Cancer and F.A.P. The focal point of his fight - watching his kids grow up and growing old w...read more
lorraine’s story
Lorraine’s perspective on Familial Adenomatous Polyposis in her family.
Lorraine describes the impact her husband’s FAP has had on them as a couple and as a family. Her story highlights the need to remember the stress experienced by family members and their need for support too. Paul, her husband, also tells his story in a recorded interview.
Lorraine’s perspective on Familial Adenomatous Polyposis in her family.
Lorraine describes the impact her husband’s FAP has had on them as a couple and as a family. Her story highlights the nee...read more
natalie savoie’s story
I am Natalie and a student at the University of North Carolina at Charlotte. I am studying to become a nurse and specialize in Pediatric Oncology.
I have no history of cancer. The symptoms I had were an increased appetite, constant weight loss, anemia, and always exhausted
I am Natalie and a student at the University of North Carolina at Charlotte. I am studying to become a nurse and specialize in Pediatric Oncology.
I have no history of cancer. The symptoms I had were...read more
survivor story: dave brusie
I graduated from high school in 1975 and worked on a farm for a short time, then in a hospital for a few years before joining the military in 1977. During my years in the Army, I was a regular blood donor, and have been for about 30 years. In May of 2005, I gave blood but when I went to give blood in August, I was told by the Red Cross technician that my iron count was too low.
Due to the large number of polyps they found (they stopped counting at 50) I had to undergo genetic testing for FAP (Familial Adenomatous Polyposis), and they were expecting me to have the gene; but I didn’t. I have 5 siblings, but only one sister has been screened; she’s 51. My parents get regular screenings. My children will not have to face screening until they reach 38 years old, but they will have to be screened early.
I graduated from high school in 1975 and worked on a farm for a short time, then in a hospital for a few years before joining the military in 1977. During my years in the Army, I was a regular blood d...read more
“Teenage cancer trust has shown me I was never alone” Phoebe, South Tyneside
I had been feeling ill for as long as I could remember, since the age of about 3. I went to the doctors all the time with bad pains in my abdomen but was just told it was IBS. Then, in 2012 when I was about 13, it got really bad. I was vomiting all the time and spending time off school. I couldn't do PE because it gave me such overwhelming fatigue and exhaustion.
Finally, I was sent to hospital to have the issue investigated properly. I had a gastroscopy, which involved having a camera down my throat to have a look in my intestine. Before I was sedated for this, the nurse told me that I would probably wake up with a tube down my throat. This was because they thought it was either Crohn's or Inflammatory Bowel Disease, and that is what the treatment would involve.
I had been feeling ill for as long as I could remember, since the age of about 3. I went to the doctors all the time with bad pains in my abdomen but was just told it was IBS. Then, in 2012 when I was...read more
“waiting to get a colonoscopy was my biggest mistake” my familial adenomatous polyposis story
I went to the Mayo Clinic in Rochester, Minnesota for a second opinion and they agreed on the results and also recommend that the surgery be performed. They concluded that if the surgery was not performed– I was at a high risk for dying with in the next six months.
I went to the Mayo Clinic in Rochester, Minnesota for a second opinion and they agreed on the results and also recommend that the surgery be performed. They concluded that if the surgery was not perfo...read more
interviews
How often should patients with familial colorectal cancer risk be screened?
Medical Research: What is the background for this study?
Dr. Vasen: People with familial colorectal cancer (CRC) have a 3-6 fold increased risk of colorectal cancer. It has been estimated that about 2% of the population have familial CRC (about 2.7 million people in the US). Previous studies showed that colonoscopic surveillance reduces the CRC-mortality by >80%. In people with hereditary CRC, i.e., Lynch syndrome (10 fold increased risk of CRC), an intensive screening program with colonoscopy 1x/1-2 years, is recommended. In familial colorectal cancer, the optimal screening program is unknown.
Medical Research: What is the background for this study?
Dr. Vasen: People with familial colorectal cancer (CRC) have a 3-6 fold increased risk of colorectal cancer. It has been estimated that abou...read more
Jon’s Story as Told by Jon
In his late twenties, Jon Olis began to see blood in his stool but shrugged it off until his fiancée pushed him to see a doctor. After a rectal exam, the doctor said he had nothing to worry about. He assured Jon that with no family history, it was probably just hemorrhoids. Jon’s colonoscopy showed that he had thousands of polyps and a large tumor in his colon. At 36, he was diagnosed with stage III colon cancer and Familial Adenomatous Polyposis (FAP), a genetic condition that causes colorectal polyps that turn into cancer. He had laparoscopic surgery to remove his entire colon, a second surgery because of complications, a temporary ileostomy and chemotherapy.
In his late twenties, Jon Olis began to see blood in his stool but shrugged it off until his fiancée pushed him to see a doctor. After a rectal exam, the doctor said he had nothing to worry about. He...read more
Kieger Family on Familial Adenomatous Polyposis
Author Laura Kieger and her son, Dr. Alexander Kieger, share their family’s courageous, century-long struggle with a rare genetic cancer syndrome, Familial Adenomatous Polyposis.
Familial adenomatous polyposis is a rare, genetic cancer predisposition syndrome caused by a deletion mutation in the APC gene on chromosome 5. By the age of 40, nearly 99% of untreated patients will develop cancer.
This is the dark shadow that has lingered over their family since at least 1911, when Mary Regan Baker was seen at Mayo Clinic in Rochester, Minnesota for symptoms of a disorder that would become commonplace in her descendants.
Author Laura Kieger and her son, Dr. Alexander Kieger, share their family’s courageous, century-long struggle with a rare genetic cancer syndrome, Familial Adenomatous Polyposis.
Familial adenoma...read more
Message in the Toilet
Jon Olis first noticed something strange in his stool in his 20s. He never told anyone about it because, really, who feels comfortable talking about what you find in your poop. But every couple weeks, after he'd go number two, he'd notice a spiral strand of dark red circling through the stuff floating in the toilet. A blood test showed Olis was severely anemic, raising a red flag that marked the beginning of his up-mountain battle. Inside of Olis's colon, a sea of thousands of polyps, like little trees, clung to his colon wall. Doctors discovered that Olis has an extremely rare disease, Familial Adenomatous Polyposis, which causes the body to produce thousands of polyps in his colon.
Jon Olis first noticed something strange in his stool in his 20s. He never told anyone about it because, really, who feels comfortable talking about what you find in your poop. But every couple weeks...read more