Lightnews — Scholar-powered news

The Zebra Alliance Community @thezebraalliance.bsky.social · 7h

DYK: October is Dysautonomia Awareness Month 🩵
If you live w a form of #Dysautonomia, what is one thing you wish people knew about what its like to live w it? 🫶
Dysautonomia is one of the, "It's not rare. It's just rarely diagnosed." Though, things are improving w education 🤗
#ANSdysfunction #POTS

Dysautonomia Awareness Month is observed globally in October to educate the public and provide support for individuals affected by dysautonomia, a condition affecting the autonomic nervous system's ability to regulate involuntary bodily functions, like heart rate and blood pressure. Started by Dysautonomia International in 2012, the month encourages activities like "lighting it up turquoise," requesting government proclamations, and seeking media coverage to increase understanding and support.
(Google)

The seven most common symptoms:
Difficulty Standing Still
Fatigue
Lightheadedness
Nausea and Other GI Symptoms
Brain Fog and Mental Clouding
Palpitations or Chest Discomfort
Shortness of Breath or Difficulty Breathing
But there are more symptoms.
The organ systems most commonly affected in dysautonomias are neurological, pulmonary, cardiovascular, urinary, gastrointestinal, secretomotor and pupillomotor.
(Info from the Dysautonomia Project. Info Graphic is from Cleveland Clinic.)

1 4

The Zebra Alliance Community @thezebraalliance.bsky.social · 7h

The New Studies coming out about hEDS (Hypermobile EDS) = People think the numbers coming out are for EDS across the bd, not knowing the studies address #hEDS or that there are 13 types of #EDS 🩵🦓🩵
It is time to share as much information as possible! The confusion is going to get worse if we don't 🤪

What is EDS? - The Ehlers Danlos Society

www.ehlers-danlos.com

4

The Zebra Alliance Community @thezebraalliance.bsky.social · 1d

Another that affects vision without pain, Silent Migraines, also called Acephalgic Migraines:
www.verywellhealth.com/silent-migra...
While less common, these are not considered a rare disease.

"What to know about silent migraines" info graphic. Follow link in post to find out the same info that is in the photo.

3

The Zebra Alliance Community @thezebraalliance.bsky.social · 1d

"An ocular migraine is an episode of (partial) vision loss in one eye, usually lasting less than one hour and is associated with a headache."

Ocular migraine

Ocular migraines are typically caused by reduced blood flow or spasms of blood vessels in the retina or behind the eye. Ocular migraines is an episode of vision loss in one eye, usually lasting less t...

www.aoa.org

1 4

The Zebra Alliance Community @thezebraalliance.bsky.social · 1d

"The ... hypothesis is that people who experience #AbdominalMigraine have overly sensitive nervous systems — specifically the primary sensory + central spinal neurons... Researchers think that certain genetic, psychosocial + environmental factors may make someone vulnerable to this hypersensitivity"

Abdominal Migraine: What It Is, Causes, Symptoms & Treatment

Abdominal migraine is a form of migraine that causes episodes of moderate to severe abdominal (belly) pain. It mainly affects children, especially girls.

my.clevelandclinic.org

1 3

The Zebra Alliance Community @thezebraalliance.bsky.social · 1d

For those who do not know what a Hemiplegic Migraine: migrainetrust.org/understand-m...

The word Hemiplegic means Paralysis on one side of the body.

Symtpoms: Head to https://migrainetrust.org/understand-migraine/types-of-migraine/hemiplegic-migraine/#page-section-1

3

The Zebra Alliance Community @thezebraalliance.bsky.social · 1d

OMG! We are SO sorry you had to experience that!!! 🩵🫂🩵 So glad you made it out the other side!!! 🩵💓🩵

The Zebra Alliance Community @thezebraalliance.bsky.social · 1d

We stay away from politics for the most part, but our home state has been taken to SCOTUS over our Conversion Therapy Ban.
If you are trans or are an ally, PLEASE, everyone, BOMBARD SCOTUS WITH PHONE CALLS & EMAILS TO NOT OVERTURN THE BAN. 🏳️‍⚧️🙏🏳️‍🌈🙏🏳️‍⚧️
#transgender #LGBTQ #LGBTQIA #SupremeCourt #Colorado

Supreme Court’s conservative majority prepared to rule against conversion therapy ban | CNN Politics

A majority of the Supreme Court signaled Tuesday it is prepared to rule against Colorado’s ban on “conversion therapy” for minors, with several justices signaling they agree with a licensed counselor ...

www.cnn.com

3 10

The Zebra Alliance Community @thezebraalliance.bsky.social · 1d

For real 💨😭🤪

#RareDiseases:
#HemiplegicMigraine
Migraine With Brainstem Aura
#AbdominalMigraine
#OcularMigraine (founder of TZA gets these)
#VestibularMigraine
#ThunderclapHeadaches
#OccipitalNeuralgia (founder of TZA gets these)
And there's more.

#headaches #migraines #chronicillness #chronicpain

"My body is a machine that turns thin air into a migraine"

2 7

The Zebra Alliance Community @thezebraalliance.bsky.social · 1d

Too many don't understand why Universal Healthcare is important. Perfect e.g. millions w #ChronicIllness don't work because of being unreliable, and deemed "unemployable". Many wait decades for diagnosis, and even then, can they afford treatment? This needs to be dealt with 🩵🦓🩵

#EDS #raredisease

"When celebrities announce their chronic illness, I feel more seen but mostly I wish they'd say they're able to resume their careers because they accessed diagnoses and treatment that less influential & especially more marginalized people wait decades for or never get"

2 8

The Zebra Alliance Community @thezebraalliance.bsky.social · 2d

#MentalHealth Alert:
If your adolescent child uses Character.AI, PLEASE read this article and uninstall the app + block the website 👉 AI is not being safely used, especially when it comes to our children and predators.

Heads Up: Roblox is another app to uninstall (and block) from your kids devices.

Colorado family sues AI chatbot company after daughter's suicide: "My child should be here"

The Social Media Victims Law Center has filed three lawsuits against chatbot platform Character.AI. Two of them are in Colorado.

www.cbsnews.com

5

Reposted by The Zebra Alliance Community

Rare Disease Advisor @rarediseaseadvisor.bsky.social · 2d

#FabryDisease is severe and causes considerable burden in female patients, according to a study that appeared in the Journal of Medical Genetics. The study also showed that #Migalastat is efficient in the long term in these patients.

Learn more: https://bit.ly/3KB4ahQ

#RareDisease #MedSky #RareSky

Migalastat Efficient in Female Patients With Fabry Disease

Fabry disease is severe and causes considerable burden in female patients and migalastat is efficient in the long term in these patients.

bit.ly

1 4

The Zebra Alliance Community @thezebraalliance.bsky.social · 2d

😇😅

The Zebra Alliance Community @thezebraalliance.bsky.social · 2d

🤣

The Zebra Alliance Community @thezebraalliance.bsky.social · 2d

We agree, but WAY too many people believe Transgender is a Mental (and/or physical) Illness, therefore can be treated - like (h)EDS/HSD - plus we had trans members & loved ones ask us not to share the study again because of how people misused it to back their phobia/hate. One transman was livid! 🏳️‍⚧️

1 1

The Zebra Alliance Community @thezebraalliance.bsky.social · 2d

Over the yrs, we have seen more connection (via studies), and land up with more questions 😉
We stopped sharing the study - Preliminary info only bolsters the mental illness stereotype = Unnecessarily hurts (the mental health of) 🏳️‍⚧️ folks already dealing w enough BS. Unfortunately, progress can hurt 🥺

SEDSConnective @sedsconnective.org · 2d

A big health study looked at how common a condition called hypermobility Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) is in transgender and genderdiverse or gender expansive (TGD) people compared to cisgender people www.sedsconnective.org/research
Tabernacki et al (2025)

1 1 5

The Zebra Alliance Community @thezebraalliance.bsky.social · 2d

If you havent yet (and are able) make sure to get out and do some leaf peeping 🍂🍁🍂 Maybe take a walk through fall leaves, and definitely enjoy some deep breaths of fresh air.🚶‍♂️🫁
#chronicillness #EDS #raredisease #invisibleillness #disability #chronicpain #mentalhealth #naturebased #autumn

3

Reposted by The Zebra Alliance Community

Rare Disease Advisor @rarediseaseadvisor.bsky.social · 2d

Bruton tyrosine kinase inhibitors (#BTKis) appeared to offset the adverse prognostic impact of #NOTCH1 mutations in chronic lymphocytic leukemia (#CLL). Study in European Journal of Haematology.

Read more: https://bit.ly/4gTTqam

#RareDisease #Leukemia #Hematology #Oncology #OncSky #RareSky

BTK Inhibitors Overcome Poor Prognosis of CLL With NOTCH1 Mutations

BTKis neutralized the adverse prognostic effect of NOTCH1 mutations in chronic lymphocytic leukemia (CLL), a study found.

bit.ly

1 4

The Zebra Alliance Community @thezebraalliance.bsky.social · 4d

Next Read > Check out Kit's book 👇😃

DYK:
- The Zebra Alliance Founder lives w Ultra Rapid-Ultradian Cycling #BipolarDisorder 1 🫨🫠👉 Awesome Team + Dx + Rx + Therapy = Things finally Stabilized 🧠🤗
- Ultra Rapid and Ultradian are Considered #RareDiseases

#mentalillness #mentalhealth #books

Kitt O’Malley @kittomalley.link · Nov 16

My memoir, “Balancing Act: Writing Through a Bipolar Life,” is available on Amazon at www.amazon.com/dp/B083H59W59/

#bipolar #memoir #mentalhealth

Balancing Act: Writing Through a Bipolar Life by Kitt O’Malley. Book cover in black & white with stacked balanced river stones.

4

The Zebra Alliance Community @thezebraalliance.bsky.social · 4d

For our friends saying, "I have a clawed hand, NF must be why!"
"Clawed Hand" could also be Dupuytren's Contracture.
my.clevelandclinic.org/health/disea...
Two of the (Visible) Symptoms of NF: Tumors and Skin Growths. Those symptoms are not part of Dupuytren's.

Dupuytren Contracture: Causes, Symptoms & Treatment

Dupuytren contracture is a genetic disorder that makes the tissue under the skin of your palms and fingers thicken and tighten.

my.clevelandclinic.org

4

The Zebra Alliance Community @thezebraalliance.bsky.social · 4d

Have you heard of Neurofibromatosis: my.clevelandclinic.org/health/disea...
There are three types: #NF1, #NF2, and #Schwannomatosis (SWN) >> "...Genetic condition that affects your nervous system (brain, spinal cord and nerves) and skin."

#neurofibromatosis #chronicillness #raredisease #disability

NF2 BioSolutions UK & Europe @nf2biosolutionsuk.bsky.social · 4d

Clawed hands are caused by damage to peripheral nerves, particularly the ulnar nerve, that control hand muscles. This nerve damage is a result of tumours in NF2.
Clawing typically occurs due to an imbalance between the muscles that flex (bend) and extend (straighten) the fingers. #schwannomatosis

1 6

The Zebra Alliance Community @thezebraalliance.bsky.social · 4d

Could also be (severe) Dupuytren's Contracture 🖐✊️

The Zebra Alliance Community @thezebraalliance.bsky.social · 4d

We wish the answer was that simple 🫠🤪😉😅
📖 Pain & Sleep: www.sleepfoundation.org/physical-hea...

#chronicillness #raredisease #EDS #hEDS #HSD #chronicpain #invisibleillness #disability #meme #healthmeme

Chronic Illness Humor @chronicillness.bsky.social · 4d

Artist: @jimbenton.bsky.social

a guy holding his back on his baed with stars all around him and a grimace on his face

when I wake up in the morning everything hurts.

It's time i faced the facts.

somebody has been sneaking in and softly and silently kicking my ass for 8 hours straight.

every night.

Artist: Jim Benton

5

The Zebra Alliance Community @thezebraalliance.bsky.social · 4d

These are great suggestions!
Would you add anything to this list?

#chronicillness #raredisease #chronicpain #invisibleillness #EDS #hEDS #HSD #healthcare

Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 4d

Building a Supportive and Caring Medical Team No Matter Where You Live - guest post by Jon Rodis

buff.ly/yZJQeDw

#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Spoonies #Zebras #Patients #ChronicIllness #NEISvoid #MedSky

3 4

Reposted by The Zebra Alliance Community

A Chronic Voice @achronicvoice.com · 5d

"This project was created to allow those with severe ME to share their #artwork with the larger #community and be SEEN! The work featured here includes pieces that were created both before and after people became severely ill.": buff.ly/a8rmo04

via @meactnet.bsky.social
#MECFS #pwME #ChronicIllness

Severe ME Artists Project 2025

#MEAction is excited to present this year's Severe ME Artists project in recognition of Severe ME Awareness Day!

buff.ly

3 9