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susannahrfox.bsky.social
Susannah Fox
@susannahrfox.bsky.social
320 followers 230 following 170 posts
Author, REBEL HEALTH. Amateur sunflower farmer. There are people who would love to help you, if only they knew how to find you.
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susannahrfox.bsky.social
NPR’s feature on caregiving is packed with wisdom gained from lived experience - including mine
Advice from caregivers: Expand your family Make yourself a care map Don’t be afraid to talk about dying
October 19, 2025 at 1:22 PM
susannahrfox.bsky.social
Caregiving in America: While caregiving is more prevalent among older adults, a full quarter (27%) of 18- to 29-year-olds report providing unpaid care to a friend or loved one. The average age of caregivers in the U.S. is 50.
susannahfox.com/2025/09/25/c...
GenZ are caregivers too: 27% of 18- to 29-year-olds report providing unpaid care to a friend or loved one in the year prior to the survey. Intensity drivers of younger and older caregivers: Caregivers under age 50 are more likely to experience family disagreements, money concerns, worrying that it is all too much, and feeling stressed out or depressed. Older caregivers are more likely to say they are confident navigating money and benefits for others. - ARCHANGELS
October 14, 2025 at 6:53 PM
susannahrfox.bsky.social
🌻
Sunflower just starting to bloom. Spiky green leaves cover most of the disk. Five yellow petals are unflolded Sunflower half open, with a half circle of florets visible on the center disk Sunflower almost fully in bloom. Three yellow petals are still folded over the brown disk of florets
August 30, 2025 at 5:18 PM
susannahrfox.bsky.social
Update 🌻
Orange petals surround a brown disk of florets on a sunflower that has grown over six feet tall
August 19, 2025 at 12:05 PM
susannahrfox.bsky.social
I LOVED this book - a medical mystery solved by the patient herself. Find out more, order your copy: www.bloomsbury.com/us/manufactu...
Book cover for Manufacturing My Miracle: One Woman's Quest to Create her Personalized Gene Therapy, by Jill Dopf Viles. Ilustrated by a red and blue double helix. In the center is a picture of the author as a young girl
August 16, 2025 at 7:33 PM
susannahrfox.bsky.social
Update
Large sunflower with yellow petals and a brown disk - half open, with spiky green leaves folded over the top
August 16, 2025 at 12:53 PM
susannahrfox.bsky.social
Velvet Queen sunflower
Orange petals surround a brown disk, two bees harvesting the pollen
August 15, 2025 at 6:56 PM
susannahrfox.bsky.social
Potential, cracking open
Tight green sunflower bud Sunflower bud starting to open, spiky green leaves surround yellow petals
August 15, 2025 at 6:53 PM
susannahrfox.bsky.social
"One of the biggest challenges is that not only are you learning to keep yourself alive, but you are also having to educate everyone around you" - Alex Durussel-Baker of Diabetes by Design. To combat misinformation, she started subverting famous designs to trick people into learning about diabetes.
3 posters are pasted on a wall above 3 folding chairs. Poster one reads "Type 1 Diabetes" and is in the style of a Beatles album cover. Poster two reads "Rage Bolus" and features a fist holding an insulin pen. Poster three is a stylized portrait of a man with the word "Insulin" under his image.
July 11, 2025 at 11:27 AM
susannahrfox.bsky.social
Reaction #2: Medication adherence is an expensive, vexing problem for all stakeholders, including patients & caregivers. I'd argue that aspects pop up in all 4 quadrants of the Rebel Health matrix:
Horizontal axis labeled Needs not met at the far left; Needs met at the right. Vertical axis labeled Visible at the top; Invisible at the bottom. Along the bottom of the image is the credit line: Rebel Health by Susannah Fox
May 20, 2025 at 2:21 PM
susannahrfox.bsky.social
A seed husk doggedly hangs on 🌱💛🌻
A green sunflower seedling with a black seed husk on a lower leaf. There’s a white seashell behind the seedling to show the contrast.
May 19, 2025 at 3:12 PM
susannahrfox.bsky.social
I’m for cancer screenings.
US Supreme Court in background, large group of people with protest signs in foreground. One sign reads “I’m for cancer screenings”
April 2, 2025 at 3:23 PM
susannahrfox.bsky.social
Nostalgia hit: a newspaper box along a country road. Covered in lichen, faded, about to be obscured in the gathering (real and metaphorical) darkness, it's a vestigial @washingtonpost.com box in Washington, VA.
A white newspaper box along a country road is covered in lichen. Faded letters are barely legible: Washington Post. There's a church in the background and the light is dimming.
March 31, 2025 at 6:20 PM
susannahrfox.bsky.social
Seeing my book in the wild never gets old. LAX -> DCA 💛💙
Yellow book with blue type: Rebel Health by Susannah Fox is pulled from a bookstore shelf labeled Science
March 13, 2025 at 7:41 PM
susannahrfox.bsky.social
Yesterday's #RallyforRare was a community-led event featuring talks on genetic testing, clinical trial design, data registries, and peer-to-peer health care. It was a room of scientists & advocates who care about rare & undiagnosed patients & families. Defiant. Fierce. Incredible.
15% of US adults live in a household affected by rare disease or an undiagnosed illness
March 1, 2025 at 3:38 PM
susannahrfox.bsky.social
Mitchell Herndon died in 2019 from Mitchell syndrome (yes, named for him) and in 2020 he was listed as an author in a journal article about this #RareDisease - beautiful example of patient-led inquiry
A slide showing a collage of a journal article and slides
February 28, 2025 at 3:34 PM
susannahrfox.bsky.social
#RareDisease is not rare
Rare disease is not rare. 8% of US households have someone diagnosed with rare disease. A rare disease is one that affects fewer than 200,000 people in the U.S. That's more than 10 million households across the country living with rare disease. Tech savvy: 63% have seen a doctor via telehealth in the past year. Don't go it alone: 50% have looked online in the past year for someone who shares similar health concerns. Exploring new territory: 38% have used an AI tool like ChatGPT or Gemini to access health info. Mental health matters: 29% have seen a mental health professional or therapist online or via telehealth in the past year. Survey conducted by SSRS for ARCHANGELS, the Association for Aging in NY, and Susannah Fox.
February 26, 2025 at 9:59 PM
susannahrfox.bsky.social
Zeev Neuwirth asked questions that allowed me to highlight the #raredisease community’s influence on me, personally, and on my research, so I’m especially pleased that this episode is being released during Rare Disease Week www.creatinganewhealthcare.com/2025/02/25/e...
"No matter what you're sufering, you are not alone. There are people who would love to help you if only they knew how to find you." - Susannah Fox, author of Rebel Health: A field guide to the patient-led revolution in medical care. Creating a new health care with Dr. Zeev Neuwirth.
February 26, 2025 at 6:43 PM
susannahrfox.bsky.social
I partnered with @ssrsresearch.bsky.social + ARCHANGELS + the Association on Aging in New York to field the survey. Topline and further details about our methodology at the bottom of this page: ssrs.com/insights/rar...
This study was conducted by SSRS on its Opinion Panel Omnibus platform for Susannah Fox and ARCHANGELS, with support from the Association on Aging in New York. The SSRS Opinion Panel Omnibus is a national, twice-per-month, probability-based survey. Data collection was conducted on two waves of the omnibus, from January 17 to January 21, 2025 and from February 7 to February 10, 2025, among a total sample of N = 2,012 respondents. The survey was conducted via web (n = 1,952) and telephone (n = 60) and administered in English (n = 2,012).
February 25, 2025 at 1:15 PM
susannahrfox.bsky.social
#RareDiseaseDay is on Feb. 28 and I'm honored to share results from the first probability-based survey to measure the population of people affected by rare disease or undiagnosed illness: ssrs.com/insights/rar...
15% of US adults live in a household affected by rare disease or an undiagnosed illness Of those half have gone online to find others with similar health concerns Telehealth and use of AI tools for health info are higher among those living in rare/undiagnosed illness households A rare disease is one that affects fewer than 200,000 people in the US
February 25, 2025 at 1:12 PM
susannahrfox.bsky.social
On Tuesday, 3/25, thanks to a partnership with @ssrsresearch.bsky.social + ARCHANGELS, we will release what we believe is the first probability-based national survey to measure the #RareDisease population + those living with undiagnosed illness
In dark times shine your light brighter. #Paint the storefronts. Illustration shows a hand holding a lightbulb and stars surrounding the words. Photo by Ted Eytan in 2020.
February 22, 2025 at 6:09 PM
susannahrfox.bsky.social
Flashback to the best #Valentine ever: my food-allergy kid's classmates clipped the ingredient list for the attached candy. Love is everywhere. Kindness matters. If your kid's class has anyone with food allergies, please consider how to keep them safe and make them feel included.
A child's Valentine card that includes the clipped ingredient list for the candy enclosed.
February 13, 2025 at 2:38 PM
susannahrfox.bsky.social
Sharing a bit of beauty from last summer 🌻
The back of a sunflower in bloom with sunlight illuminating the yellow petals
February 7, 2025 at 5:13 PM
susannahrfox.bsky.social
The 1 vs 8,765 infographic quickly spread across the world as an arresting image of patient-led care and can be downloaded in Swedish, English, Spanish, Italian, and German. And now, she's making necklaces: 1 vs 364. @sarariggare.bsky.social is a #RebelHealth icon 💛💙
Necklace made up of almost all blue beads. One yellow bead stands out. There is a silver pendant of the dopamine molecule. Necklace is coiled on top of a light brown dog.
February 6, 2025 at 5:14 PM
susannahrfox.bsky.social
Sharing a story about creativity and resilience: @sarariggare.bsky.social lives with Parkinson’s disease and devised this infographic to represent the hours she spends on self-care:
A rectangle nearly covered in blue dots. One red dot is highlighted with text that reads: To manage her Parkinson's disease, Sara Riggare spends 1 hour in neurological healthcare and 8,765 hours in selfcare per year. www.riggare.se Sara Riggare, 2014
February 6, 2025 at 5:07 PM