Lmst

Went in for one blood test.
Left with three.
A1C, Vitamin D, Vitamin B.
Nothing says chronic illness like “since you’re already here.”
#chronicillness #livedexperience #patientvoice

Doctor: “It’s uncommon.”
Me: gestures vaguely at entire life since diagnosis
Sure. Very uncommon.
#sarcoidosis #patientvoice #chronicillness #medicalgaslighting

Living with sarcoidosis means explaining it, spelling it, and then explaining it again—but slower. #sarcoidosis #chronicillnesshumor #patientvoice

Your experience with sarcoidosis is real—even on days when scans look “fine” and words fall short. Trust yourself. You know your body better than anyone.
Still here. Still trying.
#sarcoidosis #chronicillness #trustyourbody #patientvoice

Herbal medicine ≠ TikTok wellness hacks.
Chronic illness deserves research, not detox conspiracies filmed under a ring light.
#chronicillness #sarcoidosis #heartfailure #scienceoverhype #patientvoice
https://www.buzzsprout.com/2548730/episodes/18171359

Living with sarcoidosis means waking up every day and choosing to keep going—sometimes loudly, sometimes quietly. Both count. You’re still here. That matters more than you know.
Still here. Still trying.
#sarcoidosis #chronicillness #youareenough #patientvoice

Healthwatch’s abolition silences patient voice, leaving weaker accountability. Roy Lilley argues this undermines trust, replacing collective influence with hollow consumer choice. Patients want voice, not vouchers. #NHS #Healthwatch #PatientVoice

https://thetrainingnet.com/voucher/

Interesting patient perspective on an individual with multiple drug intolerances (including #hypertension - something we face a lot) www.bmj.com/content/390/... in the @bmj.com #MedSky #PatientVoice

Living with an intolerance to ...

Facing kidney failure as a child: www.ajkd.org/article/S027... in @ajkd.bsky.social Read the whole thing (should be #OpenAccess free in a few days) #NephSky #PatientVoice

As a young child I was diagnosed with Chronic kidney disease (CKD). I always knew that I was a bit different from other kids. My mum used to say to me, “you’re a special boy.” I didn’t want to be “special.” I wanted to be normal.
When I first started seeing the kidney specialist, I felt scared every time. I saw the look of grave concern and the worry etched across my mum’s face. Over time, my kidney function deteriorated until eventually, I was given a tour of the pediatric dialysis unit. As I entered and saw the sterile, cold, clinical environment, the dialysis machines beeping, the blood circulating through the tubes, and the children lying in bed, I thought, “is this what I’ll be constrained to for the rest of my life?” Inwardly, I was drowning in dread.
Fifteen years later, the period during which I received dialysis still haunts me. I have flashbacks of waking up after surgery with a central line. I vividly remember feeling traumatized by seeing a foreign object protruding from my chest. I loathed the strong smell of antiseptic used to clean my dressing, as it would make me feel sick. I was anxious every time a nurse performed my central line dressing. I was always petrified that they would pull it out – it was my lifeline.
Dialysis was so overwhelming; it drained me both physically and mentally. At one time, my blood pressure plummeted. My vision blurred momentarily. It was a moment of utmost terror. I thought I was dying. My mum and nurse tried to reassure me that ever

Beautifully written and thoughtful piece www.ajkd.org/article/S027... #PatientVoice @ajkd.bsky.social

Giving Grace

Finitude and Transcendence: A Perspective on Treatment Burden www.ajkd.org/article/S027... in @ajkd.bsky.social #PatientVoice #NephSky

This image depicts the finitude that some young women receiving peritoneal dialysis can face. Their lives can be limited and uncertain. Their abilities to achieve academic and career goals, enjoy intimacy, and build a family with children become questionable. It can feel similar to being locked up in a birdcage. Receiving a kidney transplant can feel like their only hope, their transcendence.
Even while facing these challenges, some women can thrive while awaiting a kidney transplant. They can carry on working full time, achieve their academic goals, and fulfill their social roles as if they were Superwomen. Their capes help them extend outside their cages, in the hopes that they achieve a sense of normalcy within their lives, similar to the lives of other women who may not have kidney disease.
I created an image emblematic of these emotions by using colored pencils and ink pens. The image reflects my initial feelings of finitude and my attempts to overcome them.

The Patient Voice: Antidepressant withdrawal, MUS and FND – BJGP Life

@recover2renew 🐦
The #PatientVoice: #Antidepressant withdrawal, #MUS & #FND
"🤔What is the person’s #medication history – from the very first #prescribed meds, then over the long term?
🤔When did the ‘#unexplained’/ ‘#functional’ #symptoms first become apparent.." 🤔😳

https://bjgplife.com/the-patient-voice-antidepressant-withdrawal-mus-and-fnd/

It's #RareDiseaseDay so check out our brand new #RareDisease Special Issue that will continue to grow over the next few months!

So far we have:
🔬Cutting-edge research papers
👩‍🔬An interview with Prof Veronica Kinsler from #TheCrick who pieces together the mosaic of rare skin diseases
📢 #PatientVoice interviews with rare disease #PatientAdvocates

Follow this space for even more rare disease research, reviews & interviews:
https://journals.biologists.com/dmm/issue/17/6

We're delighted to launch our new collection 'Building Advocacy into Research', driven by DMM Editor James Amatruda
@amatrudalab

This series aims to amplify the #patientvoice by interviewing various #patientadvocates

Find out more in James' Editorial:
📰https://journals.biologists.com/dmm/article/16/12/dmm050646/338281/

Disease Models & Mechanisms Volume 16 (12) Cover: Building Advocacy into Research. A cartoon depicting two people having a conversation. Colourful speech bubbles above them contain icons representing topics relevant to patient advocacy, including medicine, research, drugs, genetics, legislation and money. This image is by neilsmithillustration.co.uk

"Having a voice in your healthcare is crucial. Healthcare professionals should listen to patients' wishes and incorporate them into treatment plans." #PatientVoice

#PatientVoice

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