“As a clinical psychologist and a human being, it is terrifying to watch our state governments make laws that will harm people's well-being." Read more from our co-founder on her fears around recent anti-trans legislation:
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Susannah Fox
@SusannahFox
I help people navigate health and technology. Researcher. Caregiver. She/her.
Susannah Fox’s Tweets
Thank you for putting patients first
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The latest from the Editorial Board: Break up the human organ monopoly wapo.st/3ZfnH9a
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Gift link to the article about this historic work bc everyone could use a lift on a Monday morning
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Thank you, Jennifer, for your tireless work on behalf of patients, survivors, and caregivers!
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Federal government announces organ transplant system overhaul plans nbcnews.com/nightly-news/v via @nbcnews
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Powerful guidance from long term survivors of gynecologic cancer with data presented at 2023 #sgomtg. The only way we can improve care is when we listen to what our pts need. Thank you for your advocacy! @womenofteal @SHAREing @SGO_org
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Back in rainy DC after a week of hiking in the desert. #eyeseerox in (#LeaveNoTrace means I did not leave the 🧿)
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If you have a story about working with (or being) a clinician who is curious & willing to try new things, please share. What tips can you share for people following a similar path?
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A pattern I've noticed among patients, survivors, and caregivers active in #PeerHealthAdvice problem-solving communities, including Saffron Cassady: They talk about a spectrum of clinicians.
Curious, willing to listen & try <--> Nope
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Suspend your disbelief. Tamp down your disgust. Listen and learn from a #PeerHealthAdvice pioneer in gut health
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Take a deep dive into the promising therapy of fecal transplantation! This week @BonKu talks with the filmmaker of the upcoming documentary @Designer_Shit_, Saffron Cassaday!
designlabpod.com/episodes/111
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It will be critical, that peer supporters & those w/lived experience w mental illness & substance use disorder have a seat at the table in this year’s proposal. 🙌🏾
“My hope is that we are going to see more of a #CollaborativeApproach,”
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Jaw on the floor as I read this wonderful, searing story about + hyperemesis gravidarum, by .
#PeerHealthAdvice in the comments -> further proof of the devastating nature of this hereditary condition
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Today it’s #LongCovidAwarenessDay. My goals are the same as yesterday, but I’m even more motivated. HUGE thanks to & for creating this day for the community to share their stories, receive mutual support, raise awareness, & call the world to action
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Today marks 3 years since I first had symptoms from COVID & developed #LongCovid. On previous March 14ths, I've reflected personally on what happened, what I lost, and how I've grown. This year, I find myself wanting more to look ahead. Here's what I'm planning:
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Loved learning about how they built the retrospective cohort of 15 million patients (work at and work at scale!). Here's to piling up evidence to help people make good choices. Celebrating #ScienceEducationDay at #IS23
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Lucked into meeting Arjun Yadaw, lead author of an study showing that patients with pre-existing autoimmune disease diagnosis and/or exposure to immunosuppressant are at a higher risk of developing severe COVID-19 outcomes #IS23 Preprint: medrxiv.org/content/10.110
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Serendipity --> best day yesterday in Seattle: morning board meeting; afternoon browsing posters (#IS23 is in my hotel); then walked to Olympic Sculpture Park
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Excellent thread on the importance of rest post Covid infection
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I just heard someone recovering from acute Covid say that they can't exercise for a month to reduce the chances of developing Long Covid. That's not quite right -- though yay for knowing the link between exertion and LC! Here are some guidelines:
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CareOps hosted (), Terese (Twin Health) & Richard () to discuss how you can move faster without breaking things
McKinsey would charge $150k & a kidney for the advice shared on this panel, here are the highlights 👇
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For example, runs college & career programming for public high school & college students, centering youth leadership and voice. CARA provides 70 hours of training for their peer leaders.
Have you seen examples of #PeerHealthAdvice training? Please reply & share
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Learning about how "near peers" - those close in age & experience - extend the reach of college & career counseling programs in public high schools.
Reminds me of how #PeerHealthAdvice extends the reach of public health
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"Mental Health First Aid teaches you to see the person underneath what’s happening—separate from their illness or symptoms—and treat them with respect and dignity"
(I'm proud to be a member of the board, parent of the Regence plans) bcbs.com/the-health-of-
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Learning about Mental Health First Aid training, an evidence-based model that taps into our instincts to help each other.
#PeerHealthAdvice -> action plan
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Eating disorder recovery is always hard. Our cultural fixation on weight-loss tricks like Ozempic can make it feel nearly impossible. Thanks to for sharing her voice and for for amplifying this important topic.
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cc (in case you want to share with your members & followers :)
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Have you participated in a clinical trial within the past 10 years?
Please consider filling out a student's survey to share your thoughts on how online support groups can support - or detract - from clinical research.
More info & link to survey:
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A student is fielding an online survey to gather input from clinical trial participants, both past and present. Let’s help her succeed
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“In many cases, patients are learning more about POTS from each other than they are from doctors”
#PeerHealthAdvice -> clues and even solutions to health mysteries
Story by
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Covid is causing a sharp rise in cases of postural orthostatic tachycardia syndrome, a disorder of the autonomic nervous system that causes rapid heart rate, fainting and dizziness. wapo.st/3Suo51X
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Underground networks of patients, survivors, and caregivers pool resources -- in this case, unused cancer drugs.
#PeerHealthAdvice -> innovative health care
HT
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When Judy Heumann was told to move her disability rally because the state building didn’t have ramps, they dragged their wheelchairs up the steps—highlighting the exact cruelty they were protesting.
Gratitude for a life that wouldn’t wait for justice.
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utterly heartbroken to hear about the passing of disability rights activist judy heumann. what an incomparable loss of a woman who deserves to be celebrated and mourned in equal measure by us all 💔
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Thank you to everyone who has followed and supported Judy throughout her lifetime of advocacy. May her memory be for a blessing.
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"Disability only becomes a tragedy when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings, for example," she said. "It is not a tragedy to me that I'm living in a wheelchair."—Judy Heumann
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Here is my story about my friend and teacher, Judy Heumann. She helped change the way Americans--and then the world--understand disability. Her sudden death is a shock and a loss.
npr.org/2023/03/04/116
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My question for will be: What are you tracking as signs that we are heading in a positive direction for citizen science? How will we know we are making progress or slipping backward?
(Everyone: feel free to reply with YOUR answers)
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+ play critical roles in the drama of WE THE SCIENTISTS by so I'm hoping we get an extremely wonky discussion going at on Saturday
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I'll be there!
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Saturday, join @amydmarcus at P&P to discuss WE THE SCIENTISTS - the story of parents who became citizen scientists resarching Niemann-Pick disease type c, all while advancing the idea that science belongs to us all. 5p @ Conn Ave with @JessBravin bit.ly/3EL8fdB
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Skincare tip: Sunscreen is meant to be used every day, not just when you’re at the beach as sun damage is cumulative.
Always wear a sunscreen with broad spectrum SPF every single day, no matter the weather report and the time of year!
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In 1999, parents of a child with a #raredisease recruited 13 other patients to start a natural history study . From that seed grew a project spanning 1,300+ people and the evidence base for yesterday's announcement.
This is what hope looks like.
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#PeerHealthAdvice -> scientific advancement
This is wonderful news for citizen science + the millions of people living with a #raredisease
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Today's FDA approval of Reata drug for Friedreich's ataxia shows that in rare diseases, patient history data can make a difference wsj.com/articles/fda-w via @WSJ
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"Biopharma talks a big game about patients in the streets, but in the term sheets..." [not so much] - in a must-read #RareDiseaseDay essay
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